Part I in the “Demystifying Pudendal Neuralgia” Series
For so many the term “pudendal neuralgia” conveys a frightening and mysterious chronic pain diagnosis. And to be sure, at one time, receiving a diagnosis of pudendal neuralgia, or “PN” as it’s commonly called, was truly terrifying, especially considering that it was against the backdrop of a medical community that didn’t have answers and an online community rife with misinformation.
However, “pudendal neuralgia” literally means “shooting, stabbing pain along the distribution of the pudendal nerve.” So in reality, pudendal neuralgia is not a dark, mysterious diagnosis, it’s simply pain anywhere along the nerve that innervates the pelvic floor.
While progress has been made in the treatment of PN over the past decade, there continues to be a tremendous amount of confusion swirling around the diagnosis, not the least of which is the massive confusion surrounding the difference between the diagnosis of PN versus the diagnosis of PNE and what is the appropriate course of treatment for each.
In this post, I’m going to tackle those two points. But, that’s not the last you’ll hear about PN on this blog. It’s a topic I’ve spent my career embroiled in, and it’s one that I’m passionate about.
So this post marks the beginning of what will be a four-part series on PN. Further posts in the series will tackle PT as a treatment for PN, and a two-part interview with Drs. Mark Conway and Michael Hibner.
A Tortuous Course
Before I get into PN versus PNE, I want to first give you a brief explanation of the physiology of the pudendal nerve and the diagnosis of PN.
The pudendal nerve is a large nerve that arises from the S2, S3, and S4 nerve roots in the sacrum, and divides into three branches—the inferior rectal nerve, the perineal branch, and the dorsal clitoral/penile branch. The nerve travels a tortuous course through the pelvis to innervate:
• the majority of the pelvic floor muscles,
• the perineum,
• the perianal area,
• the distal third of the urethra
• part of the anal canal
• the skin of the vulva, the clitoris, portions of the labia in women,
• and the penis and scrotum in men.
The pudendal nerve travels a torturous course through the pelvis.
Patients with PN can have tingling, stabbing, and/or shooting pain anywhere in the territory of the nerve. Symptoms include vulvar or penile pain, perineal pain, anal pain, clitoral pain, and pain at the ischial tuberosities as well as pain with bowel movements, urination, and orgasm.
One of the things that make the pudendal nerve so unusual is that it doesn’t just have motor and sensory fibers like other nerves that exist outside of the brain and spinal cord, it also has autonomic fibers.
Here’s the significance of this unusual quality: Motor and sensory fibers innervate somatic structures, like muscles, giving us voluntary control over them. Whereas structures innervated by autonomic fibers are not under our voluntary control. The heart, lungs, and GI tract are examples of such structures.
So it’s thanks to the autonomic fibers of the pudendal nerve that our pelvic floor muscles always maintain a degree of tone, which enables us to remain continent. But we do have the ability to override the tone in our pelvic floor muscles and further contract or relax them when we wish. So, the pudendal nerve is only partially under autonomic control.
What is the relevance of this to our discussion of PN symptoms? Well, it’s because of these autonomic fibers that patients with PN can experience disturbing feelings of sympathetic upregulation when their pain spikes. Symptoms such as:
• an increase in heart rate,
• a decrease in the mobility of the large intestines,
• a constriction of blood vessels,
• pupil dilation,
• perspiration,
• a rise in blood pressure
• goosebumps, and
• sweating, agitation, and anxiety.
I’ve had many patients that have reported these symptoms. Many have told me that they thought they were going crazy or were having an anxiety attack at those times. So it’s important that patients are aware of this feature of the nerve. They’re not crazy! And with the proper treatment, these symptoms can be stopped.
The Pudendal Nerve in Men
PN vs.PNE
In order to best understand the differences between PN and PNE, you need to have a sense of the history of both diagnoses.
I began working with pelvic pain patients in 2001. Back then, nearly every patient I saw had been suffering for at least five years, often longer, had seen an average of ten other providers, and was in tremendous pain. Across the board, these patients had been dismissed, misdiagnosed, and mistreated.
However, when I came into the pelvic pain picture, a shift was happening in the medical community. It was sinking in that pelvic pain was a valid health issue that needed to be addressed. “PN,” “vulvodynia,” and “IC” were all diagnoses that had individually made their way onto the scene, but collectively they were now being handed down to patients with more frequency. So, for instance, a patient who had been told her symptoms were “all in her head” was now given a diagnosis of “PN.”
What did it mean to be diagnosed with PN back then?
Because this was a patient demographic that had been mistreated for so long, for the majority of these patients, their pain had become ingrained in their nervous systems. So as a result, the treatments that were administered, such as nerve blocks, medication and PT were not successful because they were only aimed at the periphery of the patients’ pain, not the peripheral and central nervous systems. Plus, there wasn’t the same level of understanding of the myofascial musculoskeletal component of pelvic pain or the need for a multidisciplinary approach to treatment that there is today.
Then sometime around 2003, pudendal nerve entrapment or “PNE” became the diagnosis du jour. PNE was first mentioned in 1988, but became popular as a diagnosis around 2003, most likely because of chat rooms about the condition on the Internet.
PNE is most commonly defined as a physiological entrapment of the pudendal nerve that requires surgical release. While “PNE” can certainly cause PN, it’s far from the only cause. However, one of the symptoms of PNE at the time was “pain with sitting.” Therefore, anyone who had pain with sitting, all of a sudden had nerve entrapment. Plus, the terms “PN” and “PNE” were suddenly becoming used interchangeably. So too often, as soon as there was the inkling that the pudendal nerve was involved in a patient’s pain, he or she was told entrapment was the cause and three nerve blocks and decompression surgery was the answer.
Clearly, providers were systemically over diagnosing patients with PNE. Intentions were in the right place. Providers wanted to successfully diagnose and treat their patients, and patients, for their part, wanted to get better.
PNE had emerged in the literature as a diagnosis in the 1980s when almost nothing was known about myofascial pain and chronic pain syndromes in general. Surgeons and anesthesiologists in Europe were the first ones to take an interest in PNE, and as a result the treatment methods that were developed focused on nerve blocks and decompression surgery.
Electrophysiological testing also fell within the bailiwick of this particular group of physicians, so these are the testing methods that were used to determine PN/PNE. (Remember, for a period of time the two became muddled together.) So if PN/PNE was suspected, a pudendal nerve terminal motor latency test or a “PNTMLT”, which is a nerve conduction velocity test was administered to “verify” the diagnosis. Next, patients were given three nerve blocks and medication.
For its part, A PNTMLT is a test that measures nerve conduction velocity times. The test is administered by inserting a small needle into the ventral external anal sphincter (the portion innervated by the perineal branch of the pudendal nerve). The doctor than inserts a gloved finger with an electrode into the anus and delivers a charge to the perineal branch of the pudendal nerve at the ischial spine. The recording needle electrode captures the amount of time it takes for the signal to get from the ischial spine to the sphincter. If the time is “delayed” the test is considered to be positive. This test is incredibly painful and can cause a flare that can last for weeks. Plus, at the time of testing, the secondary muscle spasm associated with the pain of the test often makes its readings unattainable.
Historically, with or without the results of a PNTMLT, the next step to treating PN/PNE was to administer nerve blocks and medications. The nerve blocks were painful and provided about four hours of relief at best, and the medication either did not help or caused side effects that were worse than the pain itself.
When that protocol failed (and it almost always did for the above mentioned reasons), the next step on the treatment train was decompression surgery. Patients were told the longer they waited to get the surgery the worse their pain would become. To further complicate matters, for a time, the only surgeons who did the surgery were in France. So patients were traveling to France en masse to have the surgery done.
Fast forward to the present day. Today there’s been a great deal of progress made in our understanding of PN and PNE.
And one of the biggest discoveries is that there is no way to know whether a patient has pudendal nerve entrapment prior to operating. I’m going to say that again because I think it bears repeating: There is no way to determine whether or not someone has pudendal nerve entrapment prior to surgery.
And in fact, the only way to know with any certainty whether there was indeed an entrapment post-surgery is a post-operative finding of pain relief. This is according to research conducted by neurosurgeon, Prof. Roger Robert, and neurologist and urologist, Dr. J.J. Labat, the team of French surgeons that developed the initial surgical technique for the PNE decompression surgery.
No Way to Know
By 2008, several groups of leading PN experts conducted studies and discredited the electrophysiological tests as diagnostic tools of PN/PNE. (A great paper that summarizes the numerous studies that led to the invalidation of the tests is “What is the Place of ENMG Studies in the Diagnosis and Management of Pudendal Neuralgia Related to an Entrapment Syndrome?” by Lefaucher, J.P., Labat, J.J., Amerenco, G., et al.)
In early days when the medical community was working to make heads or tails of a PN/PNE diagnosis, it seemed logical to apply the testing to the diagnosis. After all, it was the protocol used in other parts of the body for neuralgia and entrapment. So why wouldn’t it work for the pudendal nerve? The reason is that pudendal neuralgia and PNE is a sensory problem – pain – and this test measures the speed of motor fibers. We can not correlate the nerve conduction speeds of pain.
There are surgeons who say they believe that they can see entrapment when they open the patient up, that they can see nerves that are grey and look frayed; however, there’s not that much correlation between the levels of pain the patient has, and the doctor’s visual. Plus, surgeons are not operating on asymptomatic individuals, so we don’t know if the asymptomatic population looks the same anatomically. Therefore, it’s a big assumption to say you can see entrapment when we don’t know what “normal” is.
Today PN patients are having MRIs done. (More details on this in the fourth post in this series.) For their part, MRIs can show that there is swelling around the nerve. However, issues other than entrapment, can cause swelling, so again, this is not a appropriate diagnostic test for PNE.
So although patients continue to have these tests done and even to rely on them for proof of entrapment and PN, the fact of the matter is that all the accepted thinking in the field, even by the surgeons who perform the decompression surgery, is that the tests do not confirm either entrapment or pudendal neuralgia.
The History is the Key
The most important factor in deciding whether or not a patient has a possible entrapment is the patient’s history. In fact, this is the thinking espoused by one of the country’s leading PN physicians, Dr. Michael Hibner.
For example, if a patient who had no pelvic pain, had pelvic reconstructive surgery, and woke up from the surgery with shooting, stabbing vaginal pain, then that is likely an entrapment that probably needs to be surgically released. However, if a patient has had seven yeast infections in a row, and develops vaginal burning, it’s not reasonable to conclude that a ligament is entrapping the nerve and causing those symptoms. Connective tissue dysfunction and hypertonic muscles are more likely the cause.
So before a patient, or a surgeon for that matter, goes forward with a nerve decompression surgery, they need to be sure that the patient’s history makes sense.
Some in the medical community, myself included, believe that there are only two hard and fast situations where a nerve will likely be entrapped. One is an anatomical deviation that the patient is born with, and the other is as a result of a problematic pelvic surgery, such as a hysterectomy or a pelvic reconstructive surgery to correct a cystocele, rectocele or prolapse. If a patient has a slow, insidious onset of pain that eventually becomes burning, then that’s probably not entrapment but rather myofascial pelvic pain that is affecting the pudendal nerve.
When PN Plays a Role
By this point, I hope that I have made it clear that the diagnoses of PN and PNE are not interchangeable and that there are no tests that can show if the pudendal nerve is entrapped or that a patient even has PN.
So then how do you know if you have PN?
Today, a diagnosis of PN is a clinical diagnosis, which means the diagnosis is based on signs, symptoms and medical history of the patient rather than on laboratory examination or medical imaging. Generally, PN symptoms are said to include burning, stabbing and/or shooting pain anywhere in the territory of the nerve.
Plus, a provider can examine the patient’s pelvic floor internally via the rectum or the vagina and upon examination test the pudendal nerve by performing a technique called a “Tinel’s Sign. A Tinel’s Sign is a way to detect irritated nerves. It is performed by lightly tapping over the nerve to elicit a sensation of tingling or “pins and needles” in the distribution of the nerve.
As you may have already realized, many of these symptoms overlap with symptoms of other pelvic floor problems. This can make it difficult to arrive at a definitive, iron-clad diagnosis of PN.
However, at the end of the day, as is the case with most pelvic pain syndromes, not being able to have a written-in-stone diagnosis isn’t a big loss because with pelvic pain, the diagnosis doesn’t dictate a treatment protocol. In fact, there is no standard, one-size-fits-all protocol for treating PN. Not to mention the fact that more often than not, there is going to be a combination of causes. So at the end of the day, if you think about it, “pudendal neuralgia” is more of a symptom than a diagnosis, anyway.
Remember, “pudendal neuralgia” means pain along the distribution of the pudendal nerve. So saying “I have pudendal neuralgia” is analogous to saying “I have burning or stabbing clitoral, vaginal, or penile pain.”
So when it comes to pudendal neuralgia, the most important course of action is to figure out the underlying causes, and then figure out what needs to be done to treat them.
PN Treatment Today
In wrapping up this post, after having spent so much time talking about what not to do when it comes to PN, I’d like to spend some time discussing the actions I do recommend for patients when pudendal neuralgia is suspected. Thankfully, today patients have more reasonable, comprehensive treatment options. The best course of action is for them to approach their treatment with a multidisciplinary team approach in mind.
PT
An important player in on a multidisciplinary team to treat PN is a pelvic floor physical therapist.
At the end of the day, pudendal neuralgia is a myofascial pain syndrome that affects the nerve that innervates the pelvic floor musculature and viscera, so a PT who is expert at treating the pelvic floor should be able to address why that nerve is irritated.
However, many patients are afraid that PT will further irritate their pudendal nerve. Perhaps they’ve read on an online message board that this has happened to others with similar symptoms. Here’s the deal: PTs do not learn about treating the pelvic floor in PT school let alone how to palpate the pudendal nerve. So if a patient sees a PT that does not know their way around the pudendal nerve than yes, that PT could irritate their nerve. That’s why it’s important for the patient to do his or her homework and make sure the PT has proper level of expertise to treat them. The physical therapists at the Pelvic Health and Rehabilitation Center are specifically trained to help people recover from complex pelvic pain syndromes, including pudendal neuralgia. (Our next post will delve much more deeply into PT for PN.)
Medication
There are a handful of medications that are helpful for PN. One group is SNRIs, which are aimed at calming the central nervous system, such as Cymbalta. Other anticonvulsant drugs such as Lyrica, and Neurontin are also often top choices in this group.
Another group includes tricyclic antidepressants, such as amitriptyline, nortriptyline and desiprimine.
When working with meds, patients need to realize that they must get to the proper therapeutic dose for the proper length of time before they will experience a medication’s effectiveness. In addition, just because the medication doesn’t take away all of their pain, this doesn’t mean it is not having a therapeutic effect.
Nerve Blocks
In the past, I would have said that pudendal nerve blocks are not therapeutic. However, I believe the reason they did not work for my patients in the past is that the patients that were getting them early most likely had central sensitization due to the severity and the chronicity of their pain, and therefore any treatment directed at the periphery, whether a block, medication, or PT was not going to be as effective as it could be.
However, today, patients are getting diagnosed much earlier in the game; therefore, I believe all of the treatments aimed at the periphery, such as nerve blocks, are having higher success rates.
That said, nerve blocks should never be a patient’s only course of treatment. They are not going to be a silver bullet cure-all. Much of the time, the lasting effect on the patient’s pain is very minimal. If there is a long term effect, it will be that once the anesthetic wears off, the patient will have a little less sensitivity.
So bottom line: my advice is that if a patient has access to a physician in their community who has a reputation as being an expert at administering nerve blocks, and their insurance covers the block, then they should give it a try with the expectation that at best it may help and at worst it may cause a temporary flare. However, if the patient has to travel to another state and spend thousands of dollars to get it done, the possible benefit is not likely worth the travel and expense.
Botox for PN
Botox is very good for muscle hypertonis, which is associated with PN, so if a patient (typically with the direction of their PT), is suspicious that the obturator internus is a large part of their pain/nerve irritation, then Botox may make sense.
A good test run is to have the physician first inject lidocaine into the area to see if there is a positive effect. If some or all of the patient’s pain is reduced or eliminated during the first hour after the injection it may make sense to then inject Botox. One reason for this approach is that Botox is quite expensive, so it’s a good idea to make sure it’s going to be injected into an area that is relevant.
I mention the obturator specifically because that is a muscle that is commonly involved in PN because part of the Alcock’s Canal is made up of the aponeurosis of the obturator internus and so if there is compression in that canal, decreasing the hypertonis will take some of the pressure off of the nerve in the same way that decompression surgery would. So in fact, in such a situation where the nerve is compressed, either Botox or manual therapy can serve to free it up instead of surgery.
I hope this post has fulfilled my goal of shedding light on a few areas of the PN diagnosis that continue to cause confusion. It’s a complicated diagnosis that thankfully is beginning to make more sense, but there’s still a lot of work to do. Speaking of, stay tuned for the next post in our pudendal neuralgia series, which will focus on the
role of physical therapy in treating pudendal neuralgia . Be sure and subscribe to the blog if you haven’t already. Our book, Pelvic Pain Explained is a resource manual that helps readers understand how pelvic pain develops, it helps navigate in-clinic and at-home treatment options for men and women. Please also check out our Pudendal Neuralgia Resource List, complete with videos, blogs, and podcasts.
In the meantime, if you have any questions or comments, please leave them in the box below. I look forward to hearing from you.
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Are you unable to come see us in person? We offer virtual physical therapy appointments too!
Due to COVID-19, we understand people may prefer to utilize our services from their homes. We also understand that many people do not have access to pelvic floor physical therapy and we are here to help! The Pelvic Health and Rehabilitation Center is a multi-city company of highly trained and specialized pelvic floor physical therapists committed to helping people optimize their pelvic health and eliminate pelvic pain and dysfunction. We are here for you and ready to help, whether it is in-person or online.
Virtual sessions are available with PHRC pelvic floor physical therapists via our video platform, Zoom, or via phone. The cost for this service is $75.00 per 30 minutes. For more information and to schedule, please visit our digital healthcare page.
In addition to virtual consultation with our physical therapists, we also offer integrative health services with Jandra Mueller, DPT, MS. Jandra is a pelvic floor physical therapist who also has her Master’s degree in Integrative Health and Nutrition. She offers services such as hormone testing via the DUTCH test, comprehensive stool testing for gastrointestinal health concerns, and integrative health coaching and meal planning. For more information about her services and to schedule, please visit our Integrative Health website page.
PHRC is also offering individualized movement sessions, hosted by Karah Charette, DPT. Karah is a pelvic floor physical therapist at the Berkeley and San Francisco locations. She is certified in classical mat and reformer Pilates, as well as a registered 200 hour Ashtanga Vinyasa yoga teacher. There are 30 min and 60 min sessions options where you can: (1) Consult on what type of Pilates or yoga class would be appropriate to participate in (2) Review ways to modify poses to fit your individual needs and (3) Create a synthesis of your home exercise program into a movement flow. To schedule a 1-on-1 appointment call us at (510) 922-9836
All my best,
Stephanie
About Stephanie Prendergast: Stephanie is the co-founder of the Pelvic Health and Rehabilitation Center, president of the International Pelvic Pain Society, and an organizing member of The World Congress on Abdominal and Pelvic Pain. She has written extensively on the topic of pudendal neuralgia and teaches a course titled “Demystifying Pudendal Neuralgia: A Physical Therapist’s Approach” for physical therapists.
Comments
Thank you!!! Absolutely Fabulous Review – Incredibly Written!!!!!
Following a second fall on my tailbone I noticed that I was habing trouble tarting my urine storm and was not emptying my bladder . Soon after I got a urinary infection which left me with burning and a feling of rawness ,I think totje urethral area . After a cystoscopy in which everything was normal I started having pelvic heaviness but much worse pain on abdominal a
Pation wit the rebound test . Gynecology visit for possible PI D showed nothing. Now I have spasms , pain to start the flow ( it is as if there is something tightening in there). Tail bone tenderness , burning when sitting , burning to the buttocks and higher , back and front of thighs , fingertips , toes , any where ,you name it . It is driving me crazy ,can you help . Tried a bunch of medication , Marion nassy
Dear Marion,
I would recommend that you go and see a knowledgable pelvic floor PT for an evaluation. Where do you live, perhaps we can recommend one to you in your area.
All my best,
Stephanie
I live in alpharetta Ga. I’m cuttong in on this conversation.I had a vavinal hysterectomy and extensive repairs. They couldn’t find left fallopian tube and ovary. I had a torn cuff. I still have pain and pin sticking pin in navel pain. Sitting hurts. Would you give me the name of a good gynocologist in cumming or Atlanta GA area. rosamaryadamauney@gmail
.com
Hello Rosamary,
Please use the link below to find a pelvic floor specialist in your area.
https://pelvicguru.com/2016/02/13/find-a-pelvic-health-professional/
Regards,
Admin
Im having major bladder. Issues. Would love to talk to you.
Hi Yvette, if you fill out this form, we can get in touch with you https://pelvicpainrehab.com/schedule/
What a brilliant read up lots of things I didn’t know about, I’ve suffered with chronic pain in my pelvic area since 1996 was told to live with it.
Hi Mike- thank you for leaving a comment. Chronic pain may be common, but it is not something you have to live with forever. Have you seen a pelvic floor physical therapist to assess your pain and to create a treatment plan?
Hello, very informative post. Since November/December i’ve been feeling this heat/fever after sitting down for a while or when laying down my buttocks and my groins/thighs/vulva gets really really hot even my body if i prolong the sitting. I have to stand up to get relief. My PCP says it’s due to my weight but i’m not so sure because this never happened to me before and it’s only in that area, just right after having a nee sex partner which is weird, maybe a coincidence (i got tested for stds and everything came back negative). I must say i’ve always had a sedentary job/lifestyle but even more after the pandemic since we couldn’t go out and all that. Anyways i hope you could help me . Thank you
Hi Cynthia,
Thank you for reaching out for help. Sit pain is no joke and can be hard to avoid when we have to sit for work. We are going to link you to a few resources. One is about seat cushions that can help alleviate some pain while sitting. Another is a blog about tailbone/sit pain. This blog is about sitting on painful fascia (which sounds like it could be close to what you are experiencing). If you continue to have pain in your pelvic region, we always recommend seeing a pelvic floor physical therapist who can assess your state of pelvic health and see if they can help you manage the pain/alleviate the problem it stems from!
Thank you so much for writing such a awesome article, and for your great work helping out others in so much pain. It’s so important to have well-written, informative articles written about such a confusing, and horrifying condition. I wish this article existed in 2006.
Are you going to write an article about when pudendal neuralgia turns out to be pudendal nerve entrapment, and conservative treatment options fail?
I benefited so much from surgery in Belgium with Dr. Beco, and want others to know that with true PNE, it might be a necessary step to healing.
Thank you again,
Jonathan Scheuer
Dear Jonathan,
Thank you so much for your kind words! Yes, we are in the process of finishing up an article collaboration with two of the top PNE surgeons in the U.S. and will be publishing it after the Thanksgiving holiday. Thank you for your comment and please subscribe to the blog so that when the article is published you will be notified.
All my best,
Stephanie
You have no mention of Dr. Antalok. He did surgery on me . It was a failed surgery as so many of us have been through. I have resorted to the pain pump.
Great article. I am now seeing a pelvic floor therapist,after 8 years and 3 decompression surgeries. We are so in despair .
I know what caused my injury…it was a transvaginal mesh implant, which caused infection, fatigue, urine retention, lesions on my kidney, IBS, and knee buckling; thus falling, pain and spending time in bed afraid to leave my house.
In addition, the mesh can not be removed.
An analogy of my condition would look like this; hold a slinky, place a goose egg on top and walk with it. There is instability…it will fall forward, backward or to the side.
I can’t take pain meds, because I can’t urinate for my pain doc. It has ruined my quality of life. I have a suicide plan, actually 2 in place…that I made after my surgery. No, I am not going to do it tonight or in the next couple of days. I am still praying God will heal me on earth and that I don’t have to take those measures. I am tired, alone, misunderstood, and am sure those that do know me think I am an attention seeker. I will not be in a wheelchair having my daughter take care of me. It is my choice. I am on life sustaining drugs already…to make me urinate, have bowl movements, control my thyroid and depression. Really???
Nice to have a place to vent. Thanks
It isn’t uncommon to have those thoughts. Some times I have a few or several bad days in a row, and it’s tempting to think I’m going to stay that way. Then I can get very down, and my quality of life seems really bad. I’m don’t know what your pain levels are and maybe some days it feels like too much. The last time I was so down, and then had better days I asked my husband to remind me (if I’m in a bad flare) that a good day or series of days relatively) could be right around the corner. I hope that helps.
Also, I might feel like “my God this is too hard – I’m just existing.” Then I might start to think about what I have. Well, I have my sight, wow! I can hear, some people can’t. This is not life threatening, my gosh there are people that want to live so badly, and I am living. I also think about children with painful cancer with low chances of surviving, and the thought of children suffering makes me feel like I’m not so bad.
Hope this helps.
Dawn, God is with you every minute. I know how you feel, I have the same problems, but suicide and living with the devil that caused all our pain is not an option for me. I will continue to seek help on Earth and trust God that I and you find it. God Bless!!
Please try other doctors as the mesh can be removed with the skillful doctors. I did not Give up. Courage mesh-sister !
I had a hysterectomy in Oct 2013 and I did not wake up with any pain at all. I do get tingly weird sensations in the vagina area and sometimes the urethra burns and sometimes it does not. I get the tingly sensations off and on even when I am walking around or sitting sometimes. There are times when I feel mostly normal. I do notice it is not getting worse so I am not sure if this is PN or PNE or not. I can have sex and it does not hurt at all.I do notice that under my urethra where the vestibule is sometimes is tender, but not really pain. I did have an instance where my urethra or clitoris was throbbing, but it went away and have not had that since. I had a scope and that was normal. My doctors do not think it is nerves, they think it is my sling that is causing problems. I do not know. What do you think?
Hello Sara,
Unfortunately it is impossible to tell based on symptom description alone. It is a good idea to get evaluated by a pelvic floor physical therapist to determine if there are musculoskeletal causes for your symptoms. It also makes sense to consult with a surgeon about a surgical revision if your PT does not think she can help you. The two doctors in the US with the most experience with this are Mark Conway and Michael Hibner. Best of luck.
Regards,
Stephanie
Slings can cause pudendal Nerve damage so I would have a special MRI to determine if that is what you have. You mentioned your not in pain so I’m more apt to say it’s not pudendal Nerve damage/entrapment.
Hello,
My name is Sneha, 23years old and I am from India. I read your post, most of the terms was difficult for me to understand but I read all and at least I got an idea so Thank you so much.
Now coming to my problem , which I am facing since a long time say 7-8 years. This pain is not constant and doesn’t happen every day say every twice or thrice a month for a little time.
I get a strange kind of pain as stabbing pin or needle from inside in my naval. The pain starts with my naval and extends till my clitoris hood. This is very strange and unexplainable pain, it’s more like tingling and goose bumps givining and this pain stays for say 4-5 minutes and slowly fades away. During this pain I am not able to do movements or remain relaxed I just try to form a sleeping position and hang in there for few minutes because sitting is not possible. Along with this my clitoris remains aroused, tingling sensation, my legs just tighten . This chronic strange pin pain arises once in a blue moon and the pain stays for say 5-8mints max. And then slowly fades away. During this period peeingbis also a difficult task. I don’t know what to do where to go please please please help me. please help me. And I would like to add that I haven’t bhad any kind of surgery bor something, this pain is by birth.
Thank you.
We are so sorry to hear of your trouble. You may have pelvic floor and girdle muscle dysfunction as well as involvement of a few peripheral nerves (ilioinguinal, genitofemoral, and pudendal). We suggest undergoing an evaluation with a pelvic floor physical therapist and a pain management physician that can do selective nerve blocks and provide pharmacologic management.
This is an excellent article and makes all of this less scary and treatable for anyone facing this…
I have had pelvic floor issues and never knew the name of the nerve that may cause it–now I do. I was treated for an L5S1 disc herniation and pelvic floor issues with a specialty physical therapist who is wonderful with treatment and maintenance…
Unfortunately, I recently had a number of gynecological issues–UTI, detergent allergy, yeast infections, BV, and developed pain in this area—one doctor mentioned pudendal nerve pain–but I don’t have any of the other symptoms–no pain with urination, sex, bowel movements, etc. Im back working with the speciality PT and hoping to improve….its been a rough 3 months.
Thank you for such comprehensive information.
Hello Shannon,
Thank you for sharing your story! Best of luck in your treatment.
Regards,
Casie
Prayers hon
Don’t let up on drs! Hold them accountable if they act like they have no idea of this! Drs in other countries had to bring it here. Very good article! There is a man from England that was doing trial in Nashville! ❤️?
thank you so much for this well written article. I had major reconstructive prolapse surgery 4 months ago ,my surgeon was pleased with the outcome.but it has left me with constant pain in the areas described in your article.this has given me some encouragement as I was convincing myself that the surgery must have failed in some way.I will talk to my GP.and ask for help in this area.
kind regards
Margaret .
Thank you so much for practical but detailed perspective. I am 12 weeks post op Nichols Sacrospinous Ligament Suspension for almost complete prolapse. (history of Vag Hyst. many years ago.. ) Large enterocoele was repaired. Was doing great at 8 weeks. Now have return of vaginal itching, rectal itching and IBS symptoms, which had completely cleared up.
Stephanie
I’ve suffered from male pelvic urgency which started wen I was 25 infection which was chlamydia, I’m now 31 it has ruined my life the infection got cured, however I was left with constant chronic urgency pain based in my urethra. I’ve had cystoscopy done no problems found. Seen urologist, had lots test, they say I got nerve damage, I’m now 31 I’ve started having anal sensations feeling wet it’s horrible. Can u please help me I’m begging for a better life I have kids, and I just wanna feel better I would be so grateful if u could help I’m based down in south west England in Devon many thanks
Hi Richard,
Please use the link below to find a pelvic floor physical therapist in your area.
https://pelvicguru.com/2016/02/13/find-a-pelvic-health-professional/
Regards,
Admin
For almost a year now, I’ve felt a dull aching pain that’s hard to describe in the perineal region closest to the anus but only when sitting with pressure on the area. I have to sit on one buttocks or the other to avoid pain. If I accidentally cause pressure on the area by sitting without noticing the dull pain, when I get up and release the pressure it causes an extreme sharp shooting pain. I have no pain when I’m standing, laying down, or on a toilet. I’m male, and I’m a student with little (almost no) money. What can I do in my situation?
Hi Ryan,
It sounds like you may have a pelvic floor disorder. Unfortunately we cannot make specific recommendations without evaluating you. We would be happy to evaluate you in one of our locations or you can use our website to find a pelvic floor physical therapist in your area that can help.
Regards,
Admin
is there any way you could have this at the age of 22
Hi Isiah,
We recommend being evaluated by a pelvic floor physical therapist, the link below can help you find one in your area.
https://pelvicguru.com/2016/02/13/find-a-pelvic-health-professional/
Regards,
Admin
Hi Stephanie. I broke pelvis 20 months ago in 3 places one being 1cm separation of my pubic symphysis. I am now left with, from reading your most informative blog, PN or PNE. I am at my wits end as it restricts movement even walking is a challenge and I have been v active until I came off my push bike. I am on low dose of lyrica 150mg/day. Sitting is a real problem, I jack my upper thigh when sitting and this helps greatly. I landed hard on bitumen on right hip, pain on right side right in groin area and neuralga at rear of scrotum. Exercises and Physio of sij help but this remains chronic with levels 1 to 4 pain out of 10. Don’t know what to do. Am lying in bed on a saturday afternoon in pain. Based in Brisbane Australia. Any thoughts welcome. Cheers rob.
Author Stephanie Prendergast says:
Hi Rob,
An interdisciplinary treatment plan that includes pelvic floor physical therapy should help you week by week. It will likely take time but your providers should be able to explain what objective impairments are changing, which are persisting, and help you come up with a plan to treat them.
Hi my name is Rogelio and about 7 yrs. Ago I had an accident where I slipped and straddled a fence and the fence spikes poked my perineal with time not taking care of this I’ve been having pudendal symptoms. I live in las vegas and would like to know if there is any doctor’s that you can recommend me go see.
Hello Rogelio,
Please use the below link to find a pelvic floor physical therapist:
https://pelvicguru.com/2016/02/13/find-a-pelvic-health-professional/
Regards,
Admin
Hi I live in Las Vegas NV . I had a accident were I was helping my father passing some boards to him. My foot slipped and landed on fence. The spikes pricked me. I was ok for a while but recently I’ve had all symptoms. Please help ! My email is [email protected]
Hi Robert,
Please use the link below to find a pelvic floor physical therapist:
https://pelvicguru.com/2016/02/13/find-a-pelvic-health-professional/
Regards,
Admin
My husband has been diagnosed with demyelinating disease that ranged from calling it ADEM to now MS.
About the same time 6 years ago he experienced a complete closing off of his urethra due to enlarged prostate. He had started complaining about pain in his penis sometime prior to that but I can’t remember when. After a TURP procedure he continued to complain of a nervy pain in his penis. Jump ahead 4 years and he still has it and states that at times it is bad. He is often squeezing it as he says pressure helps.
To muddy the waters more is the fact that he has neuropathic pain across his chest and back that has been assumed to be from the lesions on his brain. Recently it has been discovered he at some point had a fracture at T12. No way of telling when that happened . He also has had a couple of bad falls early on one of which he fell hard on his rear end.
No one, including his urologist, is really addressing it, just putting it down to the brain issue. Recently though a PA for a neurosurgeon office stated she didn’t think it could be related and is a separate issue.
Any thoughts?
It sounds like he may have a pelvic floor disorder. Unfortunately we cannot make specific recommendations without evaluating you. We would be happy to evaluate him in one of our locations or you can use our website to find a pelvic floor physical therapist in your area that can help.
Hi. So many doctors I have been to cannot find out what is wrong. I have been told pudundel neuropathy by one, and she wants me to try a nerve block. I also was told by a pelvic floor specialist that I am having spasms. My vagina is sooooo red and stinging on one side all day. When i pee, the redness and pain get worse throughout the day. Are these symptoms of the pudundel nerve?? Please give me any advice you have. Thank you, leah
It sounds like you may have a pelvic floor disorder. Unfortunately we cannot make specific recommendations without evaluating you. We would be happy to evaluate you in one of our locations or you can use our website to find a pelvic floor physical therapist in your area that can help.
Thank-you!!!! Very informative, seems to explain the pain I’ve been experiencing for the last 4 or 5 years. I intend to discuss with my doctor asap.
DW
I have been diagnosed with PN and PNE by Dr. Alan Gordon in Toronto and Dr. Michael Hibner, Phoenix, AZ. I have it bilaterally and received decompression surery 2017 by Dr. Michael Hibner. I was told for the first 7 years with this unbearable pain that it was in my head by numerous Dr’s who felt psychiatry was the avenue to take Even after my surgery, which they found my pudendal nerve was wrapped in varicose veins and scar tissue to the point it caused a indentation of the nerve, my Family Dr. still did not believe and told me fresh air in the country would help. I was misdiagnosed many times and abused by the medical world until I met the above mentioned Doctors. Problem now, in order to continue to help me with this disease, I need a Dr. In Ontario that will re-refer me to Dr. Michael Hibner and Dr. Gordon is no longer practicing. When I am at mty worst pain wise, I can find no Doctor in Canada that will listen, read up on this problem and treat me, so I suffer in silence like many here. Ontario is only Province that makes us re-apply for assistance to Government so I can continue to receive treatment by Dr. Hibner and no other Dr. can help me here. It is very frustrating that many of us have to suffer in silence,. What is not said here yet is we as females due to the pain can no longer have intercourse, orgasms or get excited by our partners without increasing the pain, therefore, causing many divorces, reduced activity of any kind, pee without burning, have a bowel movement without feeling glass is passing, pelvic pain, stand for long periods, sit down, hold onto a job, walk distances, which causes some depression. It is difficult to receive any help at a hospital as in Canada our Doctors are not familiar with pelvic pain diseases, let alone PN or PNE. It has gotten worse since the opioid crisis as we were all reduced significantly or all together with our pain medication. Our quality of life has been depleted and we are made to feel that we are crazy by the same medical world that took an oath to cause no harm. We do not do the research or send any of our Doctors to France to study with Dr. Robert like the USA has.
Since Wasser Pain Management Clinic at Mount Sinai Hospital, Toronto was closed and pain medicines removed, we have been left with no avenue for help. Many people commit suicide due to the constant pain you are in and when trying to create support group, was told talk therapy does not work. We are once again suffering in silence. We need help in Canada. Thank you for writing this article an$ I can only hope that more medical Dr’s read it. But with this, to all those that have Chronic pain, try to create those special moments with friends and family and hold onto hope to get through your days.
I have been diagnosed with PN and PNE by Dr. Alan Gordon in Toronto and Dr. Michael Hibner, Phoenix, AZ. I have it bilaterally and received decompression surgery 2017 by Dr. Michael Hibner, which has reduced my pain somewhat. I was told for the first 7 years with this unbearable pain that it was in my head by numerous Dr’s who felt psychiatry was the avenue to take Even after my surgery, when they found my pudendal nerve was indeed trapped by varicose veins, scar tissue to the point the nerve was found to be indented, my Family Dr. still did not believe I was sick. My Family Doctor suggested when moving, that the fresh air of the country would help. I was misdiagnosed many times and abused by the medical world until I met the above mentioned Doctors. Problem now, in order to continue to receive help from Dr. Hibner, I require I a Dr. In Ontario to re-refer me and fill in forms for the Ontario Government as Dr. A. Gordon is no longer practicing. When I am at my worst pain, I cannot find a hospital that is familiar with PN, PNE or will listen, read up on or treat., so I continue to suffer in silence, like many others. Ontario is only Province that makes us re-apply for assistance to Government so I can continue to receive treatment by Dr. Hibner and have no other options. . What is not said yet in this article is as a female I (due to the pain) we can no longer have intercourse, orgasms or get excited by our partners without increasing the pain, therefore, causing many divorces. Our ability to be physically active as I once was has been depleted, therefore friendships are strained. Simple things like urinating has become a constant burn, bowel movements feel like glass is being passed through, pelvic pain has increased which affects our ability to stand longer than half hour, sit down, hold onto a job, walk distances without increasing pain tremendously, therefore depression. You are sent for physical therapy, in which a therapist enters your vagina, rectum with their fingers to calm down the muscles that press on this nerve. It is difficult to receive any help at a hospital as in my experience in Ontario the Doctors are not familiar with PN or PNE as they have told me, therefore no form of treatment.. It has gotten worse since the opioid crisis as we were reduced significantly or all together with our pain medication.. Our quality of life has been depleted and we are made to feel that we are crazy by the same medical world that took an oath to cause no harm. Canada is not researching or sending any of our Doctors to France to study with Dr. Robert like the USA has.
Since Wasser Pain Management Clinic at Mount Sinai Hospital, Toronto was closed and pain medicines removed, we have been left with no avenue for help. Many people commit suicide due to the constant pain you are in and when trying to create support group, was told talk therapy does not work. We are once again suffering in silence. We need help in Canada. Thank you for writing this article and I can only hope that more medical Dr’s read it. But with this, said, to all those that have Chronic pain, try to create those special moments with friends and family to get through your days. as it does help. Hold onto hope that other Dr’s like Dr. Michael Hibner will take an interest and continue the research to find a cure for us. I highly recommend Dr. Michael Hibner, he has been my light at the end of the tunnel with his professionalism, kindness and understanding.
My pain is confusing in that sometimes it starts with my toe sticking up and the pain travels all the way up to my groin. It is undescribable pain so bad I want to die. I can’t move up or down I just hang onto a chair or counter. I need to force myself to move which makes it worse but then it does start to subside. Sometimes the pain starts in my groin and then travels down the inner leg to the toe which curl up and the pain sometimes travels to the other side of my groin. Some real scary times is when I feel it travel from my toe up toy groin and then almost toy heart. It is very frightening. I sweat from the shear pain. It seems to be affected when I eat too many sweets
I don’t know, except that I live in fear of the next cramp/spasms.
Loved this article. I have been in debilitating pain for a full 2 years now. I’ve had every test possible to man at this point. I’m going through a series of 6 nerve blocks for my pudendal nerve. Yesterday, my Dr said that after my 4th block in 4 weeks with no results, we should look at releasing the nerve. Goodness, this is scary stuff. I’ve had 3 back surgeries in the past 6 years. 8 weeks after my last surgery is when all the pudendal nerve pain started. Was this a coincidence?
Think not!
Rita, you are correct in that the pains can be correlated. People with low back pain often have pelvic floor and girdle dysfunction as well and this can bring the pudendal nerve into the picture. Unfortunately pudendal nerve blocks alone are not typically sufficient for pain relief. Pelvic floor physical therapy and medical management together tend to be the most successful for patients, the treatment plans need to be coordinated and individualized. Surgical decompression of the pudendal nerve is not necessary in the majority of cases, it is more necessary when the neuralgia is directly stemming from another procedure, such as pelvic floor reconstruction or trauma from things such as childbirth.
Very informative and helpful, thank you!
This information is so helpful!! Thank you!!!
Thank you so much for this important article Stephanie. Excellent!
I have heard and read that a fall onto the buttocks or muscle strain/rupture from say weight lifting can also cause actual entrapment too. Would you say that this would only be if an anatomical variation was existing?
I know that you work primarily with the pelvic floor but my PN/PNE is at piriformis level and from a fall and subsequent haematoma (egg shaped lump for at least 4 months)in that muscle. I have various symptoms including PN. I can identify some of the ‘tortuous route’ of that nerve from some of my pain, which runs in the exact same lines. I also have scaitic, PCFN and inferior/mid cluneal nerve involvement too. My sciatic nerve does seem to travel though the muscle but the rest are probably caught up in scar tissue from the haematoma which does make sense given my symptoms.
Do you find patients who may be actually entrapped due to falls or other ‘trauma’ onset apart from post op?
Thanks Helen.
Dear Helen,
I am sorry to hear of your trouble! Your question is a good one. A fall can lead to SIJD and muscle hypertonus. These impairments, if they persist, can in turn lead to nerve irritation and compression. The fall itself rarely directly causes nerve irritation. The solution, in theory, is simple: normalize the joint and eliminate hypertonic muscles to take pressure off the nerve. Unfortunately, as I am sure you know, this is easier said than done. If the fall caused an unresolvable SI issue it is possible that it indirectly caused an entrapment. All treatments, via PT, injections, or surgery, should be directed at the impairments causing the symptoms. This can be the hard part to figure out, but it is possible with thorough evaluations to make the differential diagnosis.
All my best,
Stephanie
Very informative and helpful.
Awesome! Thanks so much for shedding light on this difficult diagnosis. I’ll be sharing this link on some forums and I look forward to the rest of the series.
Gayle, saw your post on Facebook forum. Thanks to the staff here,
I got the name of a PT in St Paul, Mn.
Hello! I would love to get the name of a PT in St. Paul, MN. I have had six laparoscopies, which then caused Pelvic Floor Tension Myalgia. I went to the Mayo in Rochester, where they so kindly diagnosed me; but driving the hour+ there and back defeated any physical therapy.
Kindly!
AMS
PS – Love this blog! Thanks Stephanie!
Dear AMS,
The PT we refer to in your area is:
Stidham Beth PT St. Paul MN (651) 999-2734 [email protected] Metro Urology
All my best, and thank you for the kind words!
Stephanie
Thank you so much!! This information has been so reassuring that I’m on the correct tract.
this was the best information ever.
This is much needed information! Looking forward to more in your series. Thanks Stephanie.
Thank you very much for such an informative and helpful article. I am only sad that no doctors or physiotherapists in the NHS, here in the UK have such joined up multidisciplinary thinking. However, my pain is not a stabbing or shooting pain, but more a burning and sometimes slow piercing pain. Would that still come under pudendal neuralgia as the pain is in the region of the pudendal nerve?
Secondly, a technical issue. The diagrams you have included in this post, are too small. Is there any way you could make them bigger? The second diagram one can click on, but it does not enlarge when you do so and the first one cannot be clicked on at all.
Thank you.
Dear Reader,
Yes, burning and piercing qualify as neuralgia. I encourage you to talk to your providers about speaking to one another. It is absolutely mandatory that the people treating you work with each other. Liz and I have made interdisciplinary communication a mandatory part of the PHRC practice. Our therapists communicate with the patient and the patient’s providers. As PTs, we get to spend more time with our patients than other disciplines are able to and therefore can act as an intermediary. Hopefully your PT sees the importance of this and can help facilitate a comprehensive treatment plan.
All my best,
Stephanie
Great article! One question: It was unclear to me what the relationship is of the autonomic fibers in the PN and the upregulation of other autonomic symptoms (you indicate that they are result of a spike in pain). But which comes first–the pain or more generalized autonomic aggravation. Any clarification of the interrelationship would be very appreciated!!!
Dear Marion,
Great question. It is not really a ‘chicken or egg’ conversation, rather, they occur together. Sometimes pain can lead to autonomic symptoms, in other cases the autonomic symptoms can lead to pain. It is truly remarkable that any activity that can cause the nerve to get irritated can cause sensory symptoms (pain) and autonomic symptoms (anxiety, sweating, shortness of breath, etc). I often wonder who made this set-up…..we need company-wide re-org of the pelvis!
All my best,
Stephanie
I just sent this to my doctor. He is trying to help, but doesn’t know much about PN. This helps tremendously. How to I sign up for your blog?
Blessings,
Mickey
Hi Mickey,
I’m so glad you found the post helpful. Please go to our homepage at https://pelvicpainrehab.com/blog, and scroll down to where it says “Subscribe to Blog”, (which is under my photo) then enter your email address and submit. That way you will get posts sent to your email immediately after they are posted online.
All my best,
Stephanie
Thanks for the very good post. It’s particularly interesting about the autonomatic nerve feature of the pudendal nerve. It explains a lot of my anxiety, I believe. When you state that there are good treatments for these symptoms, what do you have in mind? I hate taking benzodiazepines but so far they are the only options my doctor is has given me. Do you mean meditation, and the like?
Thanks again. Looking forward to the whole series!
Dear Isabel,
It is important to treat the anxiety, like you are doing, but also to treat the cause of it, which are the musculoskeletal issues that are compressing the nerve. As the pressure comes off the nerve the pain (sensory) and anxiety (autonomic) should decrease. In the meantime, pharamceuticals, nervous system quieting, meditation, etc can all be useful.
All my best,
Stephanie
Love the article. You mention entrapment can happen due to a hysterectomy but my surgeon states he was not near the nerve. I never woke up in pain but I did have feelings of things falling out. What are your thoughts?
Dear Karen,
Pudendal Neuralgia is associated with pain in the territory of the nerve. If you do not have pain the problem is likely not the pudendal nerve. Feelings of things ‘falling out’ can be associated with Pelvic Organ Prolapse of the lower GI, bladder, and bowel. Pelvic floor dysfunction may also be a cause. You would benefit from an evaluation from a pelvic floor physical therapist who can shed more light on the situation.
All my best,
Stephanie
Great article and I will be reading all your posts. I was diagnosed with PNE and the first person who gave me a diagnosis was a regular P.T. who referred me to a pelvic floor P.T. I just cried and cried when she told me I was not crazy as some drs had told me and after the first treatment I wet the bed! I am now on muscle relaxing meds; minimized exercise routine and doing stretches.
I have had 5 steroid injections and they have helped. My dr. called me and told me I need to be thinking of PNE Decompression surgery soon since I did not respond like he was hoping.
He said diagnosis is easy – he uses a big safety pin!
I will be reading your posts as you make it easy to understand what all this means. You are great!
Dear Shirley,
Thank you for your kind words!
Now for your questions: The diagnosis of PN is easy, the diagnosis of PNE is not. I am glad the injections help, however, they are never “curative”, but rarther, a management tool. I urge you not to think you have entrapment because the blocks did not “last longer” or “cure you”. If your symptoms are persisting it is likely NOT due to entrapment and more likely due to unresolved impairments – trigger points, connective tissue issues, joint dysfunction, etc. Treatment should be directed at the impairments and as they resolve you will improve. It is never a bad idea to seek a second opinion from another pelvic floor PT. Many patients do not find a pelvic floor PT who is the perfect fit on the first try. I believe the upcoming article about PT for PN will help you decide whether the PT you are seeing is the right one for you.
All my best,
Stephanie
Wow. Great article.
Thank you so much. I had rectocele surgery and a transurethral(?) sling. I have been in constant pain since. Down to point of just coming from what feels like somewhere above the urethra, but cannot sit, bend, or stand for too long. Can I assume this is PN? Do you know where I can go for help? Buffalo, NY area. The “best” uro-gyn here has never seen this.
Have you seen Dr. Howard, the head of the pelvic pain clinic in Rochester, only an hour away from you? He does know about PN and may be able to help (though he didn’t help me!).
Dear Josephine,
I’m so sorry to hear about the trouble you are having. It could possibly be associated with the PN, however, it is also possible that it is associated with the sling. You are right to seek another opinion. I recommend Fred Howard’s practice at the University of Rochester. Fred is semi-retired, however, he has excellent associates if you are not able to see him directly. If you are willing to travel further you may also want to consider consulting with Mark Conway in New Hampshire. Hang in there, they should be able to help you.
All my best,
Stephanie
Stephanie,
I am a 38 yr old woman. I had a Hemorrhoidectomy do win 05. The pain started after that. Nonstop. I’ve been to all kinds of Drs. My rectal surgeon told me there was nothing that could be done but meds, ice pack and a nerve block. My pain management dr said nerve block was to risky because losing control of bowels. My med I’m taking now is Nucynta. It worked great for a few years but now not much at all. I’m so depressed. All I can do is lay in bed on an ice pack. My family suffers. My husband does everything. I want to be able to do things with my 10 yr old son. Can you help me? How do I find out if it is a nerve problem? I’m desperate. I just need a dr to help me and no one cares.
Thanks,
Jennifer
Hi Jennifer,
Where are you located? You can also use the link below to find a pelvic floor specialist in your area.
https://pelvicguru.com/2016/02/13/find-a-pelvic-health-professional/
Regards,
Admin
Great write up. As a male physician who suffers from CPPS ( pretty much under control now), I suffered from pudendal neuralgia last year, when I was at my absolute worst. I am uncertain whether this was secondary to the tremendous pelvic muscle spasm and tension that I was having at the time,or from the internal PT as we were working on my worst and recalcitrant trigger point way back on the left, coccygeus and piriformis. While some of the symptoms of pudental neuralgia were novelties, the intimate pain was unbelievable and I now know what patients mean when they describe pain as exquisite. Your article was the first to describe the autonomic dysfunction associated with this. I had major sweats, at first only in the pelvis and would wake up in the morning soaked and wet, thinking I had wet myself in the night, and then generalized body sweats. Thanks for clarifying this. Pelvic pain is still a no man’s land for many physicians. They don’t know what to do for you and even though I’m a busy working physician, I went from being the guy who avoided doctors for myself as much as possible to the kind of patients who doctors avoid. It was because of all the information I could glean from sources such as yours, that I was able to seek and design appropriate therapy for myself. My thoughts and prayers go with all your patients.
Thank you so much for your comments Dave. I know it will help other readers!
All my best to you,
Stephanie
I found the idea of botoxing the obturator internus interesting, sounds like it may help me. My obturator internus, among others is very painful. My doctor, after performing the trans perineal surgery on me and seeing that it failed to relieve my symptoms, is thinking I may need pudendal decompression surgery (trans gluteal) left side. I have been in pt for more than 2 years. Also, back in 2011, I took a fall down steps, resulting in severe low back pain, l4andl5 disc bulge and now sacral torsion and pelvic instability. Pain with sitting, before the fall was mostly in the perineal area, sometimes radiating to my piriformis. Now, sitting is even more unbearable, as I have the additional low back and hip pain left sided. My question is really, who would be the best to go to to get the obturator internus botoxed? I live in MD. And can it really help me avoid surgery?
Thanks so much,
Kara
P.s. I have been to Dr. Marvel, as well as Dr. Echenberg in PA and am now trying Dr. David Gordon, neuro urologist (Baltimore, MD).
Kara,
I had the trans gluteal decompression surgery you are talking about. The surgery was done at St. Josephs hospital in Scottsdale AZ with Dr. Hibner. It helped my nerve pain about 30%. However it left me with terrible skin sensitivity which makes it very painful to sit and wear clothing. I now wear lidocaine patches on the place on my buttock where he did his surgery. It is also by far the MOST painful and long recouping surgery I have ever had (iv had many). I’m glad I had the surgery because I am not able to function better than I I’d but in no way is it a cure all and you definitely get a different set of problems with the decompression surgery. Dr. Hibner could not have been more professional, sympathetic and skilled. He was and still is my life saver.
Thank you So much for such a great article!!!! Botox was a horrible disaster for me and I know of others that have also suffered tremendously from having botox injected to their pelvic floor. Doctors and PT’s need to be made aware of this. Botox can lead to further damage and to increased pain.
Dear Atara,
Thank-you for your comments. It is important to remember that all interventions do come with associated risks and therefore the decision of how and what to do needs to be made carefully. I know everyone reading this post is struggling with these decisions daily, I want to acknowledge that I do realize this can be easier said than done. The effects of Botox on the neuromuscular junction last about 3 months. Therefore, if a patient experiences an adverse reaction from the injection it is usually temporary and does not cause lasting damage.
All my best,
Stephanie
Could you please explain the sudden and painful spasm of the pelvic floor muscles that sometimes occurs? Is that contraction due to an autonomic response?
Marion
Dear Marion,
That symptom can be due to numerous causes. The central nervous system, an irritated peripheral nerve, an inflammed joint or a myofascial trigger point can evoke pelvic floor muscle spasms.
All my best,
Stephanie
Thank you very much for this article!!
Can you explain me what’s SIJD? I fell on my coccys, followed by bursitis in the tailbone.
Dear Maria,
SIJD stands for Sacroiliac Joint Dysfunction. This video does a good job of describing the diagnosis: http://www.youtube.com/watch?v=1iwmcCw4bAw.
All my best,
Stephanie
Dear Stephanie
I have a very complex problem which started after my first childbirth which was prolonged and obstructed. I had a late epidural and episiotomy. My symptoms started with bladder discomfort and frequency and progressed to severe birning pain in bladder with bladder filling, distal urethra causing post urination burning and burning during urination. This has progressed to intemittent rectal shocks and pain in sit area and perimeum. I have sensory urgency, stress incontinence and reduced urine flow rate and reduced bladder pressure. I have had a release of pudendal nerve above alcocks which has reduced frequency. I am wondering whether I the perineal branch of the pudendal nerve is affected possibly from episoitomy or prolonged labour. Would this cause my symptoms? Would a Hollis Potter scan in New York confirm diagnosis?
Regards
Reo
Dear Reo,
It is possible that there is nerve involvement at the perineal branch. However, pelvic floor muscle issues can also create these symptoms. It is possible that there may be true nerve damage in cases of traumatic deliveries, in which case, multidisicplinary management is key and you likely do not need further surgery around the pudendal nerve. We do not yet have controlled, randomized clinical trials that demonstrate MRIs can confirm or rule out true entrapment, which is different than nerve damage. The MRI will likely not result in a more effective treatment plan, therefore, I would suggest using your resources on a team that would ideally consist of a urogynecologist, a pain management specialist, and a pelvic floor physical therapist. You are welcome to email me offline if you need referrals.
All my best,
Stephanie
Stephanie,
I am in therapy now, going on 6 mos., dealing with most likely a PN issue of some sort. My question is, what is the difference between central sensitization pain and myofascial pain? In addition to pelvic, abdominal, and ischial area burning (which are all on and off), I also get intense, super painful burning sensations down my legs. This is mostly around the knees, inner thighs, and sometimes calves, bilaterally. This too can come and go. Sometimes it’s just a prickle sensation. Different health professionals have told me different explanations, is there a way to tell? I can’t wait to read your other blog articles on PN/PNE.
A huge, heartfelt thank you to you and your staff for writing about this subject.
Debbie
Dear Debbie,
This is a fantastic question. We have increasing evidence that central sensitization plays a large role in chronic pelvic pain states. We also know that myofascial impaiments are highly associated with pelvic pain. Most patients likely have a combination of both issues occurring if they have been in pain for a long time. Generally speaking, myofascial pain is usually specific and often time manipulation or palpation of an involved structure can reproduce symptoms. For example, if your burning was partially or completely caused by an inflamed nerve I should be able to palpate that nerve and reproduce that symptom. Pain that is more central in origin tends to be diffuse and bilateral. People with central sensitization also tend to have severe pain reactions to non-harmful stimuli. For example, if a patient sits for 15 minutes and then has severe pain causing him to lie down for three hours there is likely a central component. I need to caution our readers that these guidelines are generalized examples to help you get the picture. We use more specific guidelines, questionnaires, and criteria. Myofascial pain and central pain are both young fields. There is still a lot we do not know and I do not think the two are as separate as we would like them to be. We will be posting a blog about central sensitization soon, so stay tuned!
All my best,
Stephanie
If the only way to tell if someone has PNE is for them to have surgery which successfully stops their pelvic pain, does this mean that surgery is of no use to those who have PN rather than PNE?
Dear Alan,
Yes, that is correct. Surgery is not a viable option for PN.
All my best,
Stephanie
Hi Stephanie
Really good article has answered some things I was unclear of. My pain began with intercourse with a new partner. Four days afterwards I developed vaginal burning and a raw feeling. I initially thought I had a std but was tested several times all clear. This cleared with antibiotics and was fine for 6 months until the same happened again with the same partner. This again cleared with antibiotics and was fine again no pain with sex. Two months later the same happened again 3 days after intercourse intense vaginal burning. This pain has stayed with me now constant for 8 months. The burning has eased but I have a stabbing deep inside my vaginal with electric shock feelings. My pain has always been right sided and at the beginning of the attacks urine infections have been present. I have seen many specialists a pain consultant thinks I have one from constipation and I should have surgery whereas the 4 physiotherapists I’ve seen think it’s because of my skeleton as I have a misalignment of my pelvis, sacrosanct illiac joint dysfunction and inward rotating hip on my right side. I also have numerous trigger points down my right side. What are your thoughts? I’m in despair with this I have lost everything job house and relationship.
Dear Kate,
I’m so sorry to hear of all the issues you are having.
You mentioned that on two occasions your symptoms cleared with antibiotics. I am going to assume that because you were on antibiotics you actually had a culture-proven infection. Symptoms of PN and pelvic pain can mimic infections so it is always important to actually get tested to make sure you take medications when infected. It is not uncommon for the symptoms you describe to be caused by musculoskeletal issues, as your PTs mentioned. Treating your numerous trigger points and joint issues should decrease your symptoms. You did not mention any bowel symptoms so I am unsure why a surgery is being suggested. I would advise any patient with pain to proceed with caution with any surgical procedure, you want to make sure it is absolutely necessary.
All my best,
Stephanie
Wonderful, wonderful article.
Can you recommend a pelvic floor therapist in the Milwaukee or Madison Wis. area? (For a woman) Keep educating …thanks.
Dear DSW,
Thank you for the kind words.
Here is a list of PTs that we refer to in Wis.: Colleen Walz: 608 775 1851, Beth Bartelsen: 262641 5771, Linda LaBorde: 414 302 0770, Sherese Hildenbranch or Debbie Callif: 262 240 1202.
All my best,
Stephanie
Thank you for all of your knowledge and information. I am having pain in my pelvic, I also go into anxiety, I get confused, I have a high superior labrum tear and a impingement and a partially torn illiopsoas muscle, I went to OBGYN to ask if he would help orthopedic I find so both could work together on me with my rehab, he thinks the pelvic is misunderstood and he performs gloved fingers going inside the vaginas pressing in all different areas, some areas hurt terribly, other areas not as much, he diagnosed me with pudendal neuralgia after he had performed a internal and external ultrasound. My groin hurts bad. It is in the area of the upper area though the worst around the bony pubic, if he does go internal I do hurt, sometimes I get numb in that area, this started on the right and then went to the left, it hurt so bad I could barely walk just lay down and ice area, and still limited relief, my chiropractor told me my inguinal ligament was out and I needed to see a orthopedic. And get surgery, i told my OBGYN all of this he wanted to do a pudendal block. I got concerned that this pudendal block would maybe block what a ortho might need to figure all of what is going on, daily I have pain, it is in my back, my stomach, my hips, my groin and travels in pain, i may get constipated. I’m on opiates, neuron ton, and muscle relaxers, I didn’t show for procedure I had a rough night. Was confused , had dysentery that morning. Does any of this make sense to you , i hurt when I urinate have a bowel movement,I feel pain in my abdomen, like a bloating feeling .it hurts when I sit, I haven’t had put for pelvis floor dysfunction for years, because they found that I had tears in my high superior labrum, and a hp impingement and a partially torn illiopsoas muscle. The OBGYN wants to do a pudendal block first, before the hip gets worked on, I am diagnosed with fibromyalgia, traumatic brain injury, neck injury, lumbar spine injury, maybe thoracic, I have pain in my legs, my feet, numbness, tingling as well in NY arms, hands, corartid artery disease was found, i do not know where to start I live in scottsdale arizona, and also have family in Niles, Michigan, and elderly parents in Venice Florida, I live alone and daily now after 8 yrs of suffering from being knocked on top of the head by a bread carrier with product on many shelves I was bringing down a ramp on a double semi wheels locked up and fell on top if my head knocking me unconscious and somehow got me off of the top of the semi and I must have landed on the front rete floor if the receiving room. So can you help advise NE where to start. I’m scared. Please. Thank you
Hi Anita,
We recommend that you consult with a pelvic floor specialist. You can find one in your area by using the link below.
https://pelvicguru.com/2016/02/13/find-a-pelvic-health-professional/
Regards,
Admin
I think I have PN. I have more pain in penis with sitting and more pain with jeans on. Why do you think I get more pain in penis with sitting? And how long will it take for the myeline to repair?
Hello,
Sitting can compress the pudendal nerve and therefore cause pain in this position that may not be present when standing. If a nerve is truly ‘damaged’ they can regenerate at a rate of roughly 1mm/month. In most cases people with PN have neural inflammation, not damage, and this is important to keep in mind.
This is an incredibly informative article. I live in London, is there anyone in the uk with the same sort of expertise that you know of?
I have seen several women’s health physiotherapists but I really need one that is more specialized like you.
Please help, I have no quality of life any more and am really struggling.
Many thanks, Elsie
Dear Elsie,
I’m so sorry to hear about the issues you are having. Yes, we do have PTs in the UK that we refer patients to: Maria Elliot and also Bill Taylor in Scotland.
Here is Marie’s contact info:
Maria Elliott
Simply Women’s Health
London Medical Centre
144 Harley Street
London
W1G 7 LE
Tel: 07958169410
Web: http://www.simplywomenshealth.com
Email: [email protected]
and Bill’s:
William Taylor
Taylor Physiotherapy Sports Injury Clinic
10 Comely Bank Avenue
EDINBURGH
Edinburgh
Scotland
EH4 1EN
Tel: 0131 332 8698
Email: [email protected]
All my best,
Stephanie
Dear Stephanie
I have all the symptoms of PN/PNE, I am having MRI tomorrow. The pain started 2 months ago & now I cannot sit at all & spend my days in bed. I am so depressed and anxious.
I am studying in Perth, Australia. Do you know of any good PT for this condition in Perth?
Thank you
Kind regards
Joanne
Dear Joanne,
I do not personally know of a PT in Perth; however, below is a resource for finding help for pelvic pain in Australia; perhaps in will be of help to you in your search.
http://www.bettinaarndt.com.au/health-sex/pelvic-pain/pelvic-pain-help-list/
All my best,
Stephanie
Hello Joanne
I am a Physiotherapist who works with people with pelvic pain (men and women) by using stoft tissue massage, ‘muscle energy techniques and exercises to release and soften overactive muscles and re-education of postural positioning and movement. I work in conjunction with Womens Health physiotherapists who do the internal work that is often necessary and frequently essential.
You may contact me by email if you would like.
All the best
Annemarie McKenzie
Reform Physiotherapy & Pilates
Really informative. Would you know a PT on Long Island in New York, who you could recommend for what you do.
Thanks
Judy
Hi Judy,
We don’t have anyone specifically in the Long Island area, but we do refer to Stacey Futterman, a pelvic floor PT in NYC. Her contact info is: (212) 226-2066.
Best,
Liz
Do you know anything about Tarlov Cysts? I have some on my S1 and S2 measuring 1.4 x 1.5cm and right posterior S2 1.9 x 1.2cm is that big, or does size finally not matter.
Hi Judy,
We do treat patients who have had findings of Tarlov Cysts. To your second question, I’m sorry, it’s one that I can not answer for you.
Best,
Liz
What is your usual course of treatment for Tarlov cyst in the sacrum S1 and S2. Is it internal manual therapy?
Specific treatment depends on the patients findings upon evaluation and symptoms, therefore there is no “usual course of treatment for Tarlov cysts”. Our blog post on good PT for pelvic pain describes our treatment philosophy in detail.
All my best,
Liz
HI I saw you mentioned you do not treat people if they have tarlov cysts? Do you feel they cause butt burning and vulva, vaginal burning? I have a small tarlov cyst on s2 that the neurosurgeion do not feel cause issues but I have had problems with si joint pain that goes into my hips and down my legs and now burning o the inner butt cheeks and now vulva, vaginal burning ? Doctor says since my cyst is small and on the right s2 I would not have any symptoms on the left side which I do. I also have fibromyalgia and myofacial pain issues for many years in my neck shoulder and jaw area? I am just wondering if you saying you don’t treat people with tarlov cysts because you feel the issue is coming from them and theres nothing that can be done at that point?
Stephanie Prendergast, MPT says:
Hi Cece,
We do treat people with Tarlov’s Cysts but as physical therapists we do not administer treatment to the Tarlov’s Cysts directly ( injections or surgery). It sounds like you have neuromuscular pelvic issues, a pelvic floor physical therapist can help you figure out what treatments can help you.
I have pudendal neuralgia but can’t find a PT on the NHS who treats it other than London and they won’t take me because I live near Birmingham. How can I find one near me? The local pt doesn’t have a clue about PN. I have one hip higher than the other due to tight muscles on one side. I have had multiple pelvic surgeries and I have piriformis pain and gluteal pain. I have SIJD too. My bladder hurts so much after sex I need help, my bladder is not infected and looks normal on cystoscopy please help thanks mel
Dear Melanie,
Below is a PT that we refer patients to in London: Marie Elliot: http://www.simplywomenshealth.co.uk/.
All my best,
Stephanie
This is a very clear, concise article about very confusing topic. Unfortunately, I was eventually seen to have PNE when it is obvious to me now that I have had PN all along. And more unfortunately, I did have surgery which was unsuccessful.
Thank you for illuminating this painful darkness.
I have a long medical history. Fibromyalgia for 25+ yrs. I was very unfortunate to have pancreatitis from a bile duct blockage. I had a cololonoscopy & have beenin severe pain for over a year. It started immediately upon returning home. Entire pelvic girdle pain & collapsing. Back is very bad shape. Bulging dics, degenerative arthritis, almost no disc L1- L5.
It’s a terrible struggle. The worst pain seems centered over bladder area. I have had total “open” hysterectomy. No one can find the “cause”, so now my PCP is talking to me about somatization disorder. (spell?). This is so very disheartening to me. I find it hurtful. I have no choice but to try to figure out why I developed this pelvic girdle pain. Between that, the Fibro, my back…Frankly, I was very “hurt”. I have seen too many doctors, but most spend an average of 15 mins. With you & they somehow believe they have made a diagnosis or push you to referrals.. I live with the pain & do not complain, but if a doctor asks me questions, I am going to give honest answers. The abdominal pain is the worst. I find it hard to “swallow” when I tell them this pelvic pain started immediately following the colonoscopy & then I developed diverticulitis within 2 wks. that followed.
Why must women suffer by being told it is “in your head”? I cannot help that many doctors are not up-to-date, although I understand busy schedules, etc.. But, like so many other patients who are in despair, you want “help”. So, you are forced to try on you own. I went through this for 5 yrs. before my Fibro diagnosis, so I am familiar with how it always endsup being in your head when a doctor cannot diagnose you. My final comment is WHO would “want” to spend time & money you do not have. It isn’t exactly “Disney World” to those of us who suffer. My hopes are that more doctors will become more informed.
Oh my goodness! Thank you so much for writing this article. It is an answer to prayer. I am at a crossroads as to which way to go next and needed this information to help me make a decision. I have had great PT over the past couple of years but only recently have begun to have my pain managed so that I can function somewhat normally. Have had seven nerve blocks over the last two years with minimal to no improvement. Maybe that’s because my pain wasn’t being managed at the time. Have never had botox to the pelvic floor but I will now seriously consider having this done. Thank you again!
I would also like to mention, if I may, that my physical therapist has been wonderful and only deals with pelvic floor issues. They know their stuff and were instrumental in getting my pain down as well as helping me get to the right pain management physician. They collaborated together which made the difference. I can only speak to my experience but want to share with anyone living in the Southern California area who is looking for a well qualified pt Sarton Physical Therapy is certainly that!
Appreciated your section on Autonomic involvement. I have been diagnosed with post-partum dysautonomia and also developed a stage 3 rectocele and stage 2 cystocele though pregnancy/delivery. Though I have shooting rectal pain and coccyx pain with sitting, that’s the least of my worries. the autonomic symptoms are debilitating. My standing blood pressure drops into the low 70s systolically, and my heart rate can double from sitting to standing. I’ve had 2 TIAs, Have been on various meds anyway, the point of all this is say I’m almost sure the two are related but my uro-gyn, pelvic floor PT, and cardiologist just look at me like I’m crazy when suggest this. But, it’s so marked. Initially, I would feel my prolapse fall out an know I had 2 seconds to sit down before I ended up on the floor… Anyway, I know it’s not the main point addressed her, however this is the first documentation I’ve found of anything even remotely acknowledging a link between autonomic impairment and pelvic floor anatomy and I’d be curious to know your thoughts.
Appreciate your insight,
Katie
Dear Kate,
It is uncommon for patients to have autonomic-induced symptoms stemming from the pudendal nerve if they do not have other sensory symptoms also – such as burning or pain. It sounds like you suspect the labor and delivery caused the prolapse and you are wondering if it also caused pudendal nerve involvement and secondary dysautonomias. I think this is unlikely but anything can be plausable. If you are truly suspicious you may want to work with an MD to attempt bilteral pelvic nerve blocks to see if this helps your symptoms. Dysautonomias can exist without pudendal nerve involvement as I am sure you know. Both things are difficult to deal with and I am very sorry you are going through this. If you choose to pursue pudendal nerve blocks please let me know how it goes. I wish you the best!
Stephanie
Hi Stephanie – Wonderful Blog Post and a
Godsend of information! Last October, I became very ill and started having a lot of pain abdominally due to severe bowel dysfunction. This is when I first began to experience PN. Eventually, I had a complete hysterectomy and also had lots of scar tissue removed from my bowels, my bladder, etc. I am still experiencing PN and have been back to the doctor a couple of times and he says this nerve pain is because my hysterectomy was quite extensive and he had to cut deep into the muscles, etc. and give it time to heal. He did refer me to a PT (who is not a pelvic floor specialist) to help with the recovery and to help with the SIJD I have. I have been twice and both times came home in excruitiating pain! Before I went the pain was finally beginning to subside and was at a lower level than before. I would have a couple of days with almost no pain and then on the 3rd day I would have a bad day. I have been getting massages which greatly help and walking which also really helps! Should the PT be making the pain worse (which lasts for a few days afterwards) or should it be better afterwards like it is after a massage or walk? Wondering about discontinuing the PT?? Do you have any recommendations for any PT’s in Natchez, Mississippi? Thank you for your much needed work in this area and I look forward to reading your other blog posts and educating myself on PN.
Dear Terry,
You should not be experiencing an increase in your symptoms after physical therapy. You should definitely see a physical therapist that specializes in the pelvic floor, not a general orthopedic physical therapist. Here’s a few pelvic physical therapists in MS and LA:
Autry
Mickie
PhD, NPC
Madison
MS
6019486540
[email protected]
Women’s Specialty Center
Deemer
Miriam
PT
Biloxi
MS
2284361588
[email protected]
Biloxi Regional Medical Center
Mike
Emily
PT
West Monroe
LA
3183961969
[email protected]
Melanie Massey Physical Therapy
Thibodeaux
Erin
DPT
Baton Rouge
LA
2253025067
[email protected]
The Wellness PT’s
Bravo
Jacqueline
PT
Lafayette
LA
3374060712
[email protected]
Bravo Therapy Services
All my best,
Stephanie
Dear Stephanie
As a male with PN since 2007,imagine my frustration. After over 20 procedures including Ganglion and Caudal Nerve blocks, 2 Radio Frequency Ablations, 2 Botox Injections all with no relief, I was suicidal. On Christmas Day 2007 I put the right 2 words together and a whole world of info became available to me.I asked my pain center if they would try a PN block, and one very brave Anaesthesiologist agreed to try a block. I was desperate and saw him consulting his Anatomy book. About a month later I realized that my pain was slightly reduced. I lived in MD and travelled to NH to see Dr. Mark Conway. He diagnosed PN and the same day I had a 2nd block by Dr. Quesada at Eliot Hospital in Manchester,NH. Dr Conway, an OBGYN told me that he see’s many men from around the country. Dr Quesade ,when asked how many PN blocks he had done-said he did not know. Finally I knew I was not crazy. It was winter and I could not travel to see Stanly Antolak, but we spoke by phone. My frustration is that I never found a PT that would take on a man as a patient. I did however find a Radiologist in Fairfax,VA that runs a pain clinic and does do the PN block. At least I did not have to fly from MD to NH. Dr. Chrostian Muller uses a CT guided approach that proved to be more precise then a Flouro approach. I’ve had 6 PN blocks and am somewhat improved. I now live in DE, and there is no one around here(Lewes,DE) or as far as Philly that does the block. After over 20 procedures I started to experience spinal side effects-loose cracking sounds when I brush my teeth. I have held off on more blocks for now, and just deal with the pain. Being male with this condition is an impossible problem. The blocks do help, but I have now developed Sacro pain on both sides. FYI- my pain was 90% in the anal sphincter and occasionally in the tip of the penis.
The anal pain started while in the hospital after they took my gallbladder because of Pancreaqtitis that I never had before.I also have a significant leg length difference of 3/4 inch and have worn a shoe build up for 15 years.
Please share my story so that other men can know that they are not crazy. I saw so many Dr’s-Proctologists, Neurologist,Gastro Dr’s and no one had ever heard of this. I have an Interstim implant for bladder issues, but not one Dr or Urologist would acknowledge PN or that the bladder is a muscle innervated by nerves- specifically the Pudendal Nerve. My mother had urinary issues with Parkinsons. I failed the Urodynamics so my insurance agreed to pay for the Interstim. This was the only way to get a Neurostimulator implant, but not the one my pain Dr wanted me to get. My battery will go in about a year or so and I will have a very hard decision to make since no one in DE does the surgery or battery replacement. I’m also concerned about if the leads will need to be replaced. The Interstim has helped reduce my frequency and urge, but does nothing for the pain. The Urologist at GW told me it would not help the pain. On one of my follow ups at GW, after several PN blocks, I asked the Urologist why she would not consider the diangnosis of PN. Her reply was ” Barry we just don’t know enough about it” My sense was that since all her patients were female, that she just dismissed me as a head case. Thanks for reading this, and for by far the best article ever!
Barry – Have you read the book, “A Headache in the Pelvis” by Dr. David Wise yet? This protocol is mainly from the male perspective. I attended the Wise clinic and it has been a major part of healing from my chronic pelvic pain. In the clinic they teach people how to do their own physical therapy and a relaxation meditation. I encourage you to give this a try, then you may not need to be dependent on providers for the nerve blocks if you can get your muscles and connective tissue to release as often as needed.
Thank you so much for the suggestion. I will search for the book on Amazon.
I never found a Physical Therapist that worked on men.
I found the article: Is it PN or PNE and sent it to Australia to Soula, a truly wonderful lady.
barry- there are a couple of pelvic floor PT that do see men – they arent that close nor far – to you now , but might know of someone in your area-
stacey devine ( 5 stars the best ) please consider seeing her- lot of towners sometimes come an book a series of appts over a weeks time. ( maybe you still have family/friends in MD and can stay there reducing cost)
she does SO MUCH more than pelvic PT ( and is a master at that- has hands of butter ! Plus, her pain theories are totally up to date – and help! http://www.devinept.com/ @ 10 miles west of Baltimore she sees males and females equally ** recommeded highly
and there is a male pelvic PT in Annapolis area – Jody Schmidt Jody Schmidt, PT, L.Ac. Sexologist, American College of Sexologists
269 Peninsula Farm Road, Suite C
Arnold, MD 21012
Phone: 410/544-3100 FAX: 410/255-8682 E-mail: wifluv2jody(at)aol.com
Specialties: Female Pelvic Pain, Female Genital Trauma, Sexual Health Recovery and Rehabilitation, Male Pelvis Pain.
( I didnt feel comfortable with him as a pelvic pt ;( – accupunturist YES – but that had to do w/him being male
not his fault)
Jennifer Ortiz at http://www.herhealthpt.com/ might also know of someone treating men. I do know that Dr Echenberg in Bethlehem PA sees quite a few men. His office should have PT resources in PA .
best of luck- have you had a sacral MRI? My pain was casued by 4 tarlov cysts- I had them surgical treated by Fiegenbaum – NS in Dallas. and a number of the TCD ( tarloc Cyst Disease men I know had anal pain as their main symptom ) many times a typical lumbar/sacral MRI DOES NOT cover the sacrum- were cysts are typically – or the dude reading the MRI fails to mention tarlov cysts as they are still in the dark ages and didnt read the memo 2008 requiring them to write down what they see! and am way way better – almost back to normal 🙂 long road but was helped greatly after surgery- by both stacey devine and Jennifer Ortiz – and Dr Echenberg- 2/3 for sure see males very often .
Thanks Stephanie. Appreciate your thoughts.
Thank you for the great article.
I have been struggling with a burning in my perineum area for about three months. When i lay down most of the symptoms go away but i have this weird sensation the tingles from my anus toy penis. I notice muscle spasms when i sit and then get up. I have seen a Urologist and he has placed my on cipro as well as anti inflammation meds. Could this be a nerve trapped? The symptoms came on gradual and have stayed with me for awhile. I did not have any surgery or trauma. The tingle and odd shooting pain in this area is what has me concerned.
.
One other thing i wanted to mention was that i could make the nerve sensation go away by tightening up my anal sphincter and holding it. Once i allow the muscles to relax again the nerve sensation returns. Thanks
Dear Chris,
Please see my answer to your prior question:
Burning can be characterized under nerve pain, yes. Tingling, burning, and sharp shooting electrical like pain is thought to be neuropathic in nature. Nerves can be irritated in different scenarios, and increased muscle spasms or a “short” pelvic floor can be one of them. On the other hand, some people can experience nerve sensations when the pelvic floor muscles “bulge”. They lengthen past their normal baseline, and can exert a stretch or pull on the nerve. This is why sometimes people with nerve irritation feel more symptoms after a bowel movement, for example, because the pelvic floor bulges a little to accommodate the BM and it irritated the nerve. It sounds like you would benefit from a PT eval by a qualified pelvic floor therapist who is skilled in treating pelvic pain and possible nerve irritation. I would think that if you don’t have an infection, the Cipro may not be helping your symptoms very much. I think you are appropriate for a PT eval, to see what structures are implicated in your pain, and what needs to be worked on.
Best,
Marcy
Longshot, but Chris, did you figure out how to fix this? I have the same issue.
Dear Chris,
Burning can be characterized under nerve pain, yes. Tingling, burning, and sharp shooting electrical like pain is thought to be neuropathic in nature. Nerves can be irritated in different scenarios, and increased muscle spasms or a “short” pelvic floor can be one of them. On the other hand, some people can experience nerve sensations when the pelvic floor muscles “bulge”. They lengthen past their normal baseline, and can exert a stretch or pull on the nerve. This is why sometimes people with nerve irritation feel more symptoms after a bowel movement, for example, because the pelvic floor bulges a little to accommodate the BM and it irritated the nerve. It sounds like you would benefit from a PT eval by a qualified pelvic floor therapist who is skilled in treating pelvic pain and possible nerve irritation. I would think that if you don’t have an infection, the Cipro may not be helping your symptoms very much. I think you are appropriate for a PT eval, to see what structures are implicated in your pain, and what needs to be worked on.
All my best,
Marcy
Hi i have what i believe is PN my symtoms started after taking a ssri frug for anxiety . my symptoms are pelvic floor spasms that feel like persistant genital arousal with burning around my clitoris and bladder urgency and restless legs. what do you know about PN and PGAD induced by a ssri drug?? Thanks kellie
Dear Kellie,
I personally do not know anything about an SSRI causing PGAD and/or PN. I’m sorry I can’t be of more help.
All my best,
Liz
http://www.ncbi.nlm.nih.gov/pubmed/18224549
http://www.ncbi.nlm.nih.gov/pubmed/19674253
http://www.ncbi.nlm.nih.gov/pubmed/19686432
trazadone actually has PGAD listed as a possible side effect – as do many of the other SSRIs when looking at the fine print – if you were a male showing up w/ PGAD in an ER the first thing they’d ask is about SSRIs or trazadone ! ( a common off label sleep med for pelvic pain pt)
I have been to several doctors I was wondering is it possible to get pn or pne from over stimulation to the Ciltoris with your hands?
No, it is not possible to get PN/PNE this way; however, any time you cause pain to the pelvic floor area you can kick off a pain cycle, i.e. the muscles become tight, blood flow is reduced, nerves become irritated due to tight muscles and so on.
Best,
Stephanie
I found this article very helpful as I have seen every type of consultant in the UK and still have no ‘definition’ of the pain which started as burning in the urethra, then became a horrible pain deep inside when it was painful to sit, walk or lift anything, followed by a loss of sensation in the vagina and perineal area. I don’t really have stabbing pains just a constant burning and some minor urinary incontineUce from time to time and chronic constipation. Cold this be PN- it came on after I became sexually active at the age of 50 after several years of abstinence? I think I may have overindulged at the time! also have a bad pain in my back and hip which an osteopath just said was probably the psoas muscle, but could that contribute to the pain in my abdomen and the impact on my bladder, bowel and vagina? Grateful for any thoughts as to what may have caused my symptoms. I have previously been told that I have myofascial pain disorder in my neck, but does this make it more likely to happen in the pelvis?
Many Thanks
Jean
Dear Jean,
Your symptoms sound more like pelvic floor dysfunction rather than PN, and you are correct that myofascial issues elsewhere make this probable. Intercourse after a period of abstinence can be provocative if there were underlying issues that were not yet symptomatic. Do not worry, you did not ‘damage’ anything. I suggest seeing a physical therapist for a pelvic floor evaluation, you are welcome to email us offline if you need referrals. There are very qualified people in the UK that can likely help you.
All my best,
Stephanie
I found this informative. I am male and broke my pelvis in three places (sacrum and ramid left side panels sorry about spelling), some 18 months before the onset of severe pains which have worsened over the last year. Even though I have trapped nerve routes L4/L5, this only explained the problems with leg pain and numbness.
But PNE answers every other symptom and I mean every other symptom. I tell the PT it can be agony doing pelvic floor exercises, and that I have a urge for a bowel movement, but they brush it off. As to say I’m putting it on or its all in my head and to carry on doing them.
In fact you have also answered why my BP is so high, 204/162 at one point. The cardiologist is/was at a loss as to why as there is no reason (after many tests) as to why it was so high.
Many thanks as this makes a huge difference just to know it’s not all in my head. It may not be the outcome or answer I wanted, but it makes a difference to know this is probably the answer. And just knowing is a huge relief, and again, many many thanks!
Dear Reader,
I am so glad that you found this post helpful. Please be careful, however, not to jump to the conclusion that you have PNE (pudendal nerve entrapment), recall from the article, that your symptoms may also be due to any number of/combination of myofascial musculoskeletal pelvic floor impairments. My advice to you is to seek out and visit a physical therapist who is an expert at evaluating and treating the pelvic floor.
All my best,
Stephanie
Thank you for all your info
i had fascia pubo sling 4-22-13 as a result of failed burch fron 2010
Once i was awake i had severe pain and had no control of left leg
Dr told me the stir up repositioned during surgery
I ended up with 2 blood transfusions a large hematoma throughout left pelvis left bladder wall and vagina
Torn thigh muscle damaged obrutrator nerve torn abdominal muscle and unclear on the prudendal nerve
I have NO comfortable position every symptom of prudendal nerve damage fits me to a tee except relief when i sit on toilet it makes it worse
I have gait instability due to leg severe leg inner thigh groin vaginal anal top of pelvis and back and abdominal pain
I feel as if i have been kicked in the crotch area by steeltoes and i am wearing and electrical tampon there feels like massive electrical needles having a war in my leg and entire pelvic area
Now the dr of course is covering his butt so i dont sue him by trying to blow it off as it must be a pre existing condition or my back which has all been ruled out
I have to use a cane to get outside and then a wheelchair i just cant do it
I have two small children my husband had to take a leave to do everything for the past two months they have me on pain meds along with gabapentin which just keeps me from crying
I just had the 4 th catheter removed due to bad bladder retention and have to cath myself 40% of the time usually at night when pain is worse
I am looking for a new dr both urogyn and neuro because they just seem shady through this all i have even been trying to get a pt appt for a month and still no call backs
I am so fustrated they told me within 3-4 months i should be able to walk unassisted and healed in a year
The for has almost resolved i have no control if i have a strong urge to urinate i just go urinating is so painful anything is
I have to change positions about every tens mins or i will throw up from the pain
My anxiety level is off the charts i just want to cry i am useless
Any help would be appreciated
I am in queens ny so any dr suggestions would be great too
Thank u for listening
Sincerely
heather
Dear Heather,
I’m so sorry about all that you are going through! I recommend that you make an appointment with: Futterman Stacey PT New York NY (212) 226-2066. She is an excellent pelvic floor PT, and you will be in the best hands with her.
All my best,
Stephanie
I’ve been dealing with chronic intense pressure in my clitoris for almost two years now. The first time I felt it was the first time I got BV, then I had recurring BV infections and every time the feeling came back but went away once the BV was treated. Then a year ago, I got BV once again (joy!) and the feeling came back. However, the BV went away and the feeling did not. It’s been all day, everyday ever since. It feels like someone is just pressing their finger right on my clitoris at all times (and not in a pleasant way). I’ve been misdiagnosed as having IC and received painful DMSO treatments that got me nowhere. A doctor just told me last week that it could be my pudendal nerve, however the nerve block did nothing. I’m at a loss and terrified this is going to be this way for the rest of my life. I want to have a baby, but this has put my plans of hold for nearly two years. I really don’t know what to do anymore or what steps to take. Any advice is greatly appreciated. .
Dear Reader,
My advice to you is to go and get an evaluation from a qualified pelvic floor PT. We see many patients like you whose symptoms begin after repeated vaginal infections, either yeast or BV. Where are you located? Perhaps there is a PT that we could refer you to in your area.
All my best,
Stephanie
I have been a sufferer of this PN “symptom” for many many years. I have a long history of vaginal pain, including several pH issues after many courses of antibiotics as a child, and then for most of my life a sufferer of vaginismus, which I cured in the past few years with the help of Kegel exercises and a very kind and patient partner. Needless to say, I have had a lot of trauma associated with my pelvic area, and in the past few years I have been having these week long episodes of stop-you-in-your-tracks sharp knife-like pains in my vulva and clitoral area. After reading a lot about PN, and generally doing a lot of investigation, I have come up with a technique that seems to have GREATLY reduced the amount, length, and intensity of these episodes. I believe that over the years I have begun to “tuck my tailbone” in (like a permanent kegel) because of the trauma that I have experienced in my pelvic area – always protecting myself, worried that I might feel pain. Every moment that I catch myself doing this – during exercise, in the car, walking around at the grocery store, I have begun to repeat to myself “let your tail relax”. I have been doing this for nearly two months, and have not had a single day of pain. We’re all different, but it’s worth a try!!!
Dear Samantha,
Relaxing your tailbone might in turn be relaxing or “dropping” your pelvic floor muscles, which is indeed good for pelvic pain. However, if you are a pelvic pain sufferer or have had pelvic pain in the past, you should NOT under any circumstances be doing kegels. Please see our blog post on how kegels can be detrimental to pelvic pain. https://pelvicpainrehab.com/blog/2012/08/why-kegels-are-bad-for-your-pelvic-floor/
All my best,
Stephanie
It is good article which has enlightened me on PN. I am suffering from severe pain for the last 3 years. Have undergone epidural injection and ganglion impar block but no relief to the pain. Unable to sit.Only taking Tramazac 50mg (Tremedol) one A DAY WHICH GIVES ME RELIEF FROM PAIN FOR ABOUT 8 hours. Rest of the day just lay down and endure the pain.I would be glad to know if any permanent solution is there for eradicating my pain. I am now 65 yrs.Regards
Dear CM,
I would recommend that you begin by seeing a qualified pelvic floor physical therapist. Where do you live; perhaps we can refer you to one in your area. All my best, Stephanie
I’m wondering if you could advise me?
Approx 7years back I was working on a house site mixing concrete in a wheelbarrow and lifting 40kg bags of cement all day,i went home that night for a shower and to my horror I felt my left testicle had drooped significantly.Suspecting a hernia I subsequently saw my doctor,had scans etc but all came up as clear.Since that day I have had groin pain,aching and sometimes drooping left testicle and pelvic pain with pain going down my left leg and left bottom cheek.Also since that day urination has been affected,slowness and hesitancy and frequent urges in the day and at night.Sexual arousal has lessened with erectile disfunction a lot of the time and getting worse.
My urine would get terribly discoloured and a slight stinging in in tip of penis would sometimes develop.I found Cyproflex significantly helped,but it keeps coming back.
I always suspected my condition could have been related to some kind of muscle or nerve damage but my doctor and specialist never mentioned anything along these lines,instead saying I had benign prostatic hyperplasia or prostatis on which several different drugs have been tried without any success.
Now I have found your article which makes me think I could have damaged my Pudental nerve that day and it has evolved into what I am suffering from now.
Would this assumption make sense to you?
Many thanks.
Dear Mark,
There are a number musculoskeletal pelvic floor issues that could be causing your symptoms, not just an irritated pudendal nerve. I’m not surprised that your doctors have not identified your symptoms as possibly being due to your pelvic floor as most physicians are not up-to-speed on the pelvic floor.
What I would recommend is that you find a qualified pelvic floor PT to evaluate you. Where are you located? Perhaps we can refer you to one in your area.
In addition, I would give this blog post about male pelvic pain a read:
https://pelvicpainrehab.com/460/male-pelvic-pain-its-time-to-treat-men-right/
Also, take a look at the page about male pelvic pain on our website:
https://pelvicpainrehab.com/male-pelvic-pain/
All my best,
Stephanie
Kellie, I also have PN and for years had severe like blow torch up my bladder. they treated me for IC but now with the pn it is so much worse. I get the constant pressure and orgasmic feeling which is horrific. I do not know anyone else with this..
Please contact me at [email protected]
Thank you for this wonderful article. Could you please recommend a PN educated pelvic floor PT in Minneapolis, MN? Thanks olga
Dear Olga,
The PT that we refer to in MN is in St. Paul; her info is: Stidham Beth PT St. Paul MN (651) 999-2734.
And thank you for the kind words!
All my best,
Stephanie
I would like to add that professor guercini in Rome has good protocols for treatment of the pudendal nerve, his wife is a urologist for Women who choose to go.
His website is aimed mainly at men and prostate problems but the pain of ithis leads onto pudendal nerve problems, I have had this and can say his treatments have been effective for me. it is allays a worry about treading info on the Internet but I believe his cv gives a good account of his background. I will not go into the details of my treatment as I am not a qualified doctor .
Great article! My PN began a couple years after menopause, with great vaginal atrophy, with a tremendous amount of sitting at my computer every day during the day and then more at night.
I was initially diagnosed with Vulvadynia. I was very, very sore and could no longer wear pants.
But things got worse. Before long I couldn’t sit AT ALL. I could lay down on my back and sit on a toilet seat without pain. After that I developed constipation so severe that I deal with every day. No amount of high fiber diet, glasses of water or exercising could change it. I had to rely on Miralax. Took a trip in the car lying down on my back and condition worsened considerably. Constipation got much worse and has stayed that way. Most products don’t help anymore, even though I only used a laxative a handful of times. Did pelvic floor therapy for a year with the best of the best. She finally had to release me. Electric shock sensations in pelvis and bowel, with Pins and needles, numbness, pain, and odd sensations of things moving around, twisting, pulling, torquing. I’ve had two nerve blocks, have tried acupuncture, massage, and nutrition therapy and chiro. i am now having feelings of neuropathy in my neck, hand and feet. mGastroenterologist had to refer me to neuro gastroenterologist. My old life is gone, but I try to keep a positive attitude and count my blessings, which are many. Any thoughts on why I am not getting better? PN or PNE? Thank you.
Dear Dawn,
It sounds like many factors are involved here. First, do not give up. Second, you need to find a medical professional to help you coordinate the providers that you are going to need to straighten this out – likely a GI, PT (you should definitely try another PT. You say the PT you saw was the best of the best, but, it’s odd that she released you? Why did she release you? Did she ever relay to you what her findings were?), pain management doc, etc. Unfortunately I cannot explain why you are not improving without thoroughly evaluating you. But, please contact us offline ([email protected] or call our office!) if you would like a referral to someone we trust in your area.
All my very best to you,
Stephanie
PS. Can no longer have sexual intercourse or achieve climax. Also have urinary urgency and have many accidents mostly urinary (many changes of clothes per day – not making it on time, and very occasionally with a bm.). Feeling of softball up my rear. Swollen belly, severe foul gas most days many times per day, Pain and swelling after B.m. I still cannot sit without pain. Can sit for perhaps 1 – 3minutes at most. Sometimes just that little amount can cause big pain flare for the day. Also had PGAD before symptoms began.
I have been experiencing pelvic nerve pain with sexual dysfunction increased sensations and was getting no answers which led me to a pelvic floor therapist who happened to help that symptom when I went for an actual treatment they worked on my back saying it could be coming from there and my symptoms got worse is this expected ?
Michele,
I’m sorry, but I do not understand your post. First you said the PT helped “that” symptom, then you said it make it worse. Please explain further.
Nonetheless, a pelvic floor PT should not be working mainly on your back. Here is an article about what good pelvic floor PT is like; please read it and make sure that you are getting the right PT; not all PTs are created equal.
https://pelvicpainrehab.com/401/what-is-a-good-pelvic-pain-pt-session-like/
All my best,
Stephanie
Dear Stephanie,
I am post op four mesh removal surgeries, the last one April 2013, at that time the surgeon did a partial vaginectomy as well as resecting more mesh. Right after surgery I had pelvic, vulva area, rectal area pain, pressure burning… I cannot sit for long each day, the day starts out with a low pain level and by the end of the day I am flat on the couch. I am have had one pudendal nerve block that helped for 16 hours and am starting PT. I am worried I have entrapment caused by the surgery.Is there anyone you know in Michigan, or any where for that matter who can diagnose if I have possible entrapment. I did not have any of this pain prior to the surgery. thank you for all of your help!
Dear Susan,
I’m so sorry to hear about all that you are going through. I don’t know of a doc in Michigan that is a PN specialist. Two docs that we recommend as being highly knowledgable about PN are Drs. Mark Conway in New Hampshire and Michael Hibner in Arizona. Both extremely knowledgable.
All my best to you,
Stephanie
Good afternoon Stephanie,
This article was truly a miracle. I had surgery july 11,2013 for pelvic pain. I have seen many GI docs. They thought it was Diverticulitis. One GI specialist thought it could be endometrial adhesions( i had a full open abdominal hysterctomy july 2009 at the age of 27). My gyn who I have been with for 15 years performed the surgery reluctantly. Immediately after surgery I contacted my doctor and told him I was having a stabbing pain in my vaginal area. It got worse while sitting and upon standing the stabbing pain would take my breath away. Every symptom I read was verbatim what I have been describing to my doctor. I feel like I am 31 and I am going to break a hip. The pain shoots from my pelvic region to my hip. Nothing is comfortable. Sitting, standing, lying down. When I am lying in bed when I stretch my left leg out it feels as if I’m going to tear a muscle. My PCP just started me on Cymbalta yesterday. My gyn of 15 years dropped me as a patient. No warning, I just received a letter stating he was terminating our patient/doctor relationship. My PCP told me they were running into “roadblocks” with my GYN and he would personally find me a new one. I wanted to give you a litle history, but my main question is, should I request to have a decompression surgery or just see if the Cymbalta will help? I have been unable to work since April 15,2013 due to a lower GI bleed. I have had 8 procedures since then. This pain I currently am having started AFTER my surgery July 11. My employer will make me a prn employee as of Sept 15 since I have been unable to work. I feel like I am on a ticking time bomb diagnosis wise and I need to get some type of treatment ASAP. I can’t continue to live my life this way. The pain is so horrible. Thank you for writing this article and your advice would be greatly appreciated.
Thank You,
Toni
Dear Toni,
I am so sorry to hear of your trouble. The good news is that your pCP sounds committed to helping you get your pain under control. Cymbalta sounds like a reasonable treatment option, however, your case needs to be managed with a multidisicplianry approach and at this point I would not consider you a good surgical candidate. Your treatment plan should consist of physical therapy, appropriate pharmaceuticals, and possibly medical intervention such as nerve blocks and myofascial trigger point injections, possibly botox. Your team needs to work with you to differentially diagnosis which structure are causing your pain and come up with a strategy to eradicate the problems.
All my best,
Stephanie
Dear Stephanie & Staff,
I am a 65 yr old women who had a complete hysterectomy in May 2013. 4 months prior to surgery I started experiencing the feeling of something being stuck in my vagina along with a heaviness (pressure feeling). I went to my gyn doc and she said she did not fin anything on the pelvic exam but gave me an ultra sound. It was at that test that I felt a severe burning on my left side. The tech had me insert a wand so that they could get a good look at the uterus during ultra sound. That burning pain never seemed to go away from that point on. I then went to a urologist and was told that I had a prolapsed uterus and that my bladder was not emptying all the way. Had a second opinion and was told the exact same thing. Also had a very large firoid cyst in my uterus. Had robotic hysterectomy and 4 days after surgery still had the burning pain in my vagina area on one side. Surgeon tried estrogen cream, antidepressant meds and finally put some lidocaine in the suspected area. I was pain free for about 4 days and then it all came back. I have a call into the surgeon to see what the next step is to try and get rid of my pain. Sitting is very painful. I get relief sleeping but as soon as I’m on my feet for 5 min. it comes back. Standing gets painful late in the day. Still working full time as a secretary.
Loved your PN and PNE explanation and hoping to find either a PT or someone in my area (Bucks County, Pa, outside of Philly) who is up to snuff on this.
Thanks so much for your help,
Donna
Dear Donna,
I’m so sorry about all that you are dealing with!
We see many patients who develop pelvic floor problems after surgery. It is quite common. I definitely think that you need to be evaluated by a knowledgable and experienced pelvic floor PT. Here are two pelvic floor PTs that we know of in your area:
Sheth Hina PT Philadelphia PA 267-282-1301
Rejba Amy MSN, CRNP Philadelphia PA 2158638100
Please give this blog post a read, it describes what we consider to be a “good pelvic floor PT” session: https://pelvicpainrehab.com/401/what-is-a-good-pelvic-pain-pt-session-like/
Please do not hesitate to write again if you have any further questions. We also offer free 15-minute phone consults if you’d like to discuss your situation further.
All my best,
Stephanie
Hi
I have had these symptoms that is explained in this article. I have seen a number of doctors with no answer. Symptoms are unknown pain in penis, anus, all kinds of electrical pain in abdominal. I have been treated for IBS. I would like to know what kind of doctor do I need to see. Im located in louisana.
Dear Kevin,
You need to find a qualified and knowledgable PT as your pain might be pelvic floor-related. Here are two PTs that we refer to in La: BravoJacqueline Lafayette LA3374060712
MikeEmily West Monroe LA3183961969. Also there is a great urologist in New Orleans who is knowledgable about the pelvic floor (not all are); her name is Dr. Susan McSherry. Here is her contact info: 4429 Clara St, New Orleans, LA 70115; (504) 894-9102. Also there is a great yahoo online support group called Happy Pelvis that I would recommend that you join for info and support. The members are very pro-active, unlike many online groups that can be a bit depressing. You will get great advice on Happy Pelvis as the moderator, Tiff McDonald is extremely knowledgable: check it out at: http://groups.yahoo.com/neo/groups/happypelvis/.
Please read the following blog posts; one is about male pelvic pain and the other is about good pelvic floor PT:
https://pelvicpainrehab.com/507/why-kegels-are-bad-for-your-pelvic-floor/
https://pelvicpainrehab.com/460/male-pelvic-pain-its-time-to-treat-men-right/
also check out the male pelvic pain page on our website:
https://pelvicpainrehab.com/male-pelvic-pain/
All my best,
Stephanie
Hello,
My PT says I have Pelvic Floor tension Myalgia and perhaps PN. My symptoms are burning in my legs and feet, muscle spasm, intense burning in the pernium and pain during intercourse. Frequent and urgent urination. It hurts if I have to hold it. My pain is minimal in the morning and gets worse at night. I have no herniated discs, diabetes or any other diseases. No Urological or prostate issues. Sometimes my body twitches slightly when I relax. It feels like I am in pain overload. The PT helps but the burning always returns. Are these typical symptoms of PN or PNE? Thank you for your time.
also I CANNOT sit on hard surfaces. Sitting is horrible pain for me. I try to avoid it. Also standing for extended period of time kills me.
Dear Rob,
Don’t get stuck on the diagnosis of “PN” or “PNE”. What’s more important is for your PT to figure out what impairments are behind your symptoms. If she or he feels that your pudendal nerve is involved, then you might think about whether you want to take advantage of the list of treatments provided in this post, such as blocks, botox or medication. However, your pain could very well be muscle-driven. If this is the case than a “good pelvic floor PT” will help.
As to your symptoms, we commonly see all of the symptoms you described in our clinics. Upon working with our patients, we can ultimately tell if their symptoms are muscle or nerve driven and from there we recommend the appropriate treatments.
All my best,
Stephanie
If it is muscle driven will nerve blocks or botox help? THanks.
Hi
Thank you for writing this wonderful and informative blog.
I have urinary symtoms urge/frequency/hesitancy and later develped sit bone pain…After many intervention.(you name it!) plus nerve re-section surgery..
I cannot tolerate sitting at all! Standing also became painful ; being on my feelt provokes the throbbing which worsens as day goes on.
I have been basically housebound for 2 years while seeking pain relief.. I have had lots of PT with some qualfiied folks but one thing I learned from your great article is nobody explained what they were doing ,and I couldn’t tell you exactly what typeo PT was done with me.. but I can tell you that I wasn’t evaluated as thoroughly as you described…I was told by one well known PT that my CNS is too ‘revved up ‘and to give it a break from PT for awhile while I pursue pain managment.. The latter is tough as many drugs cause urinary hesitancy and ALL pain meds cause constipation.. I realize I need to get my bladder calmed down to help me tolerate the drugs…Also theres a vicious cycle in that the constipation issues probably irritate the bladder..
BTW the my anal and perineal pain has always been a throbbing, piercing ache like the worst tootache ever… in the anal area. I DON’T have burning,numbness etc which usually are the signs of neuropathic pain…Would my pain still be considered to be be pudendal neuralgia? My practitioners (all of them) have called it neuropathic pain (with a muscular component..) The latter is surely true as it feels like there is a vise in my urethral tighening things when I pee, and my anus is tight as well. I would love to travel to see you ladies but don’t think I could handle the plane ride. (the sitting!)
(I live in NJ…near NYC)…I would love it if one of my PTs could discuss my case and come up with a new plan that covers all of the things that you describe in your evaluation for PN.. and IC.
I am a mom who needs to drive again to take care of my family and be part of their lives, and to live again in general
I also would love to speak to you as you understand this brutal, life changing pain better than anyone.. Please help.
Thanks and hope to speak with you!
Kathy ,from NJ
Dear Kathy,
From your description of your symptoms it sounds like there are several factors contributing to your symptoms. I’m sorry to say that without evaluating you, I can not tell you whether your pain is PN, and at the end of the day, as I mentioned in the blog, it’s more about the physical findings and less about putting a label on the issue. You do bring up some important questions regarding PT. While we do offer 15-minute phone consultations, without examining you, I wouldn’t be able to consult with your local PT about your case unless he or she sought out my opinion.
I’m so sorry about all that you are going through, but don’t give up on finding relief and I encourage you to continue to seek out options such as pain management.
All my best,
Stephanie
Thank you for an inspiring post. The things you said about PN being just a symptom not a cause is so logical, yet hard to come up with.
I have suffered with a severe burning pain which started quite suddenly from the skin around my anus, then moved more to vulva and radiated to my left buttock and thighs. The pain was the worst when sitting and I even think it was triggered by long hours spent sitting in my office so now I try to avoid it. Recently I’ve developed a lot muscle spasms in my buttock and thigh and next to my rectum (in the muscle) I have noticed the kind of pain (and most probably the same place) I had after my surgery for anal fissure 3 years ago – more dull than sharp, but since than also laying on my left side or on back make feel this pain (still with burning vulva and skin around my anus). I am trying to think if there is any correlation between the old surgery and these pains now that are a lot different than back then.
Since it all started I have noticed I cannot eat any amount of sugar – it brings awful flare up that can last even 2 weeks (after eating 1-2 small chocolates or a teaspoon of sugar). I don’t eat any sugar apart of naturally occurring sugars. My sugar level is normal.
I had MRI scan made and it shows some bulges on lower back spine and some fatty atrophy paraspinal muscles. My doctor says it has nothing to do with the pelvic pains because it doesn’t pressure my spinal cord, but since I read your post it made me think more about causes of these pain, and not only ways to mask it with medication or nerve blocks that they’re referring me to.
Do you have any thoughts about what can be causing me the pain?
I am so depressed and in the age of 30 feel like no one wants to help me.
Dear Meg,
I’m so sorry about all that you are going through, but from your description of your symptoms alone it is really impossible for me to tell you what is causing your pain. I would have to complete a physical examination to make an assessment. I’m sorry I can’t be of more help. My recommendation to you would be to seek an evaluation from a skilled pelvic floor physical therapist. If you need a recommendation for a PT in your area please feel free to contact our office at: (415) 440-7600.
All my best,
Liz
On 9-17- 2013 I had rectocele surgery in Albuquerque NM,
It included Utero Sacro Ligament Suspension and leaving the Uterus in.Also they did a pineography and used a Pudental block. I am 62 years old and had a stage 3 Rectocele.
The operation lasted over 4 hours. When I woke up I had stabbing pain in the left buttock.a few days later, I developed hypersensitivity along the left hamstring area and on the left side of my Vulva and inner thigh. My Dr. examined me internally to see if one of the sutures, 4 temporary and 2 permanent were at fault with no decision. I am going back on 9-30.I have extreme pain all the time walking ,
sitting and using the toilet any advice?
Dear Ravelle,
If you woke up from surgery with these symptoms likely something happened during surgery that is pulling on a nerve branch. I would ask to have the suspension taken out or revised at the very least asap. In addition, you may need to seek another opinion.
All my best,
Liz
I had the same thing Liz….1st Liz go to a Pelvic Pain Dr and ask for a MRN NOT A MRI the MRN checks all the nerves in the pelvic area and it will show Pudential Nerve Damage if you have it. I did. I could not sit ,stand or walk for more then 15 mins. Good Luck.
Carly
Hello! I am having a persistent burning pain since early June. Sometimes I don’t feel it at all. Sometimes it seems to be worse after sitting. When standing it doesn’t seem to bother me as much. If I quickly twist my body a certain way or quickly pick up something heavy I feel a quick shooting/stabbing pain on the inside of my buttocks not far from the rectum. I’ve had days since June where I thought the issue vanished, to only come back a couple days later. Any ideas? Who would be a good provider to see for this? I am in the middle TN area. Thanks so much. (today I went to the chiropractor for the first time in my life, he says it could be a vertabrae pinching or compressing a nerve in my lower back which runs down to this area. He confirmed several of my vertabrae are out of alignment.) I am a male, healthy, and in my early 30’s.
Dear TC,
I would recommend that you see a pelvic floor PT. We have treated patients with your same symptoms. Also, I would read this article about male pelvic pain.
https://pelvicpainrehab.com/male-pelvic-pain/460/male-pelvic-pain-its-time-to-treat-men-right/
Below are the PTs we refer to in TN:
Nieves Alfredo MD Chattanooga TN 4234901136 [email protected]
Kubic Melissa PT Chattanooga TN 4237788660 [email protected]
Best,
Liz
This is a very old post but Dr.Michael Swan,Urogynocology, Nashville TN is amazing.
(615) 515-9180
Hi,
Great article. I am a 37 year-old female. I have suffered from worsening constipation since 2001. I have been extremely sedentary most of my life with one period of anorexia. I also suffer from Proctalgia fugax. Very little interest in sex, because I always felt burning during and afterwards. Constipation got really bad in 2012 which coincided with a weightloss program. By the end of Oct. 2012 had really bad right lower quadrant pain thought to be due to severe constipation. In Dec. 2012, I started Pilates and was doing lunges and squats as part of an exercise routine. In mid-Dec. 2012, I noticed that my external vagina felt raw. I thought it was an allergic reaction. All tests for yeast, BV and STIs negative, but treated as a yeast infection. Had an extremely itchy rectum. Also given lots of anti-fungal creams for the external vagina. Symptoms became progressively worse. Sitting was very uncomfortable and my clitoris felt like it was on fire. I felt waves of sensation through-out my vagina and all the way to my rectum. Burning in my buttocks, belly, pubic bone, thighs and feet. I had two sharp points of pain in my buttocks. By the end of Jan. 2013 the pain put me out of work. Given gabapentin and took 3 weeks off. I am now at 2400 mg gabapentin, 30 mg amatriptine, 1500 mg rebaxen and 2400 mg ibuprofen a day. Also been getting PT since April. Anesthesia seems to stop all pain for a short time. Pain levels have decreased, but lately labia and vaginal opening burning seem to be worsening. Pain is bilateral, but far worse on the right. I still work 3 days a week driving 90+ minuets a day. I was diagnosed with PN, but wondering if this could be PNE. I just don’t understand why the pain seems to be getting worse. I only sit during my commute. I get pain when standing and laying down. If I don’t stand on my right leg, pain seems to stop for a bit. Any ideas why and what my PT could do to explore this? If I have PND from the constipation or something else, can that ever heal?
Sorry for the super long post. Just very scared and confused about all this.
Thanks.
Forgot to add that I live in Webster, MA (central MA near Worcester). Do you know of any PTs in my area. I have been going to South County in Auburn MA.
Thanks,
Dee
Hi Dee,
I’m not familiar with Mass. so below is a list of all the PT in Mass that have taken our class; hopefully one is near you.
Clarke Anne PT Braintree MA (781)348-2500
Fonti Hannah PT Danvers MA (978) 304-8701
Levesque Ann PT Beverly MA (978) 927-7668
Lewis Elizabeth Burlington MA (978) 761-3149 and (781) 744-8617
King Linda PT Brauntree MA (781) 519-4756
Bentley Carolyn PT Amherst MA (413) 253-0413
Barnicle Katie PT Westwood MA 7814319144
Cole Elizabeth PT Waltham MA 7814873821
Gillis Janet PT Dartmouth MA 5089980620
Machugh Lalla PT Quincy MA (617) 479-8500 x 126
Perlis Raquel PT Wellesley Hills MA (781) 237-9006
Herman Holly PT Cambridge MA (617) 576-3204
Wade Marie PT Framingham MA (207) 779-2256
Cunningham Patrick Acc Arlington MA (617) 489-2381
Lewis Elizabeth PT Gloucester MA (978) 761-3149
Bentley Carolyn PT Northampton MA (413) 582-2113
Berger Stacey PT Westboro MA (508) 366-7899
Herlihy Sarah PT Wellesley MA (781) 237-9906
Best,
Stephanie
Dear Reader,
Before I answer your question, I have to ask you what exactly is your PT doing during treatment. Not all PTs are created equal. Below is a blog post about “good” pelvic floor PT.
https://pelvicpainrehab.com/patient-questions/401/what-is-a-good-pelvic-pain-pt-session-like/
Also, if sitting is a trigger, you should try a cushion. At the bottom of this post, you will find a few cushions that we recommend: https://pelvicpainrehab.com/books-products/
Also, are you doing anything to treat the constipation? Constipation will worsen pelvic pain.
Best,
Liz
Hi Liz,
Thanks for your reply and for pointing me to the article. I take Miralax twice a day for the constipation.
I try to keep a pain diary, but I don’t always flare right away, so I have a hard time attributing pain levels and activities. I also have a hard time with reporting pain levels. I hurt 85-100% of my waking hours with varying severity.
My physical therapist is in Auburn, MA (Patty P.). She asks me about symptoms after my last treatment. I get 10-20 minutes of heat on my hips and thighs. She usually does cranial-sacral and works on the muscles in my thighs a bit. Then we may do a little external trigger point with. We may do 5 minutes of internal vaginal trigger point work. To be honest, I’m not really sure about what feedback I should be giving with the trigger point. I have a hard time with the internal work because I get a burn at penetration that overrides almost all other feelings. It just feels weird having her finger moving around.
I do use a cushion for sitting, but it only helps a little. The only time I sit is in the car or the bathroom.
I live in Webster, MA near Worcester, MA. Do you know of any PTs in my area.
Regards,
Dee
Hello,
my problems started 2 years ago when I woke up with burning in my anus. After week or two, burning started also in vulva and vagina, like someone pour an acid in it. Went from one doctor to another, first diagnosed I have candida issue, then I got prescribed medication. It did not help. I used so many vaginalets, it just did not help. Other STD – nothing found, went to tests.
In July 2013, I went under operation of occult hernia. Repaired. (non mesh technique. In September 2013, went to EMG test of anal and urinar sphincter which showed both side lesions of pudendal nerve, both branches. Next step is to go to MR or MRN.
So my symptoms are: burning in the anus after defecation, burning in the vulva and vagina during and after sexual intercourse, pain in clitoris and clitoral area after orgasm. Could I have PFD rather than PN?
I would also like if you can give me some address and name of the PT person around my country? I am from Croatia, Europe. Thank you for your time!
Dear Esthelle,
I’m so sorry about all that you are going through. I am also sorry that without evaluating you I can’t tell you exactly what is going on with your pelvic floor. And again we do not know of any PT in your country. Is it possible for you to travel to France or the UK?
All my best,
Stephanie
Dear Stephanie,
thank you for your kind reply. Do you have any address for a good PT in France and UK, or somewhere even closer to Croatia, like Italy or Slovenia? Thank you very much!
I have an electrical shooting pain from my hamstring down to my heal. Chiropractors acupuncturists and PT’s have thought it was sciatica. MRI and other tests came up negative. I started doing ART (active release therapy) it wasn’t really helping. Then my therapists thought it might be a pudendal nerve issue based on all of my symptoms. Could the pudendal nerve somehow interact with the sciatic nerve? Or is it possible to have those symptoms just from the pudendal nerve? Thank you
Dear RK,
The pudendal nerve is very close to the sciatic nerve and they commonly become dysfunctional together. An MRI will not diagnose sciatica and the PN is not likely responsible for the pain down the leg. A pelvic floor physical therapist should be able to help you tell the difference.
All my best,
Stephanie
Dear Stephanie,
About five years ago, my symptoms started with the feeling of a lump at the opening of my vagina, although there was no lump. It felt like there was an object there. Then a burning and aching feeling settled in. At times, the burning felt like it was as far up as my bladder. I constantly had the feeling that I had to urinate. But it actually burned worse AFTER my bladder was empty. Sitting also made it worse. I suffered horribly for a few years, and went to various doctors but could not get answers. Wonderfully, the past year has been pain free for the most part – I don’t know why. It would flair up whenever I strained during exercises such as weight lifting, but would feel better during exercise such as walking or playing volleyball. Why would that be? Unfortunately, out of the blue, my pain returned a few months ago. Even during the worst of times throughout this ordeal, I will have a day or two of NO PAIN. How can it come and go like that? Does this sound like possible PN?
Your article gave me hope that PT could be my answer. Would you please recommend a pelvic floor PT in Colorado? I have insurance through Kaiser – do you happen to know of anyone in the Kaiser system? If not, I will go to anyone who can help me.
Thank you so much for your article.
Kate
Dear Kate,
It’s not unusual for pelvic pain to be intermittent or to be caused by different athletic activities. It’s just the nature of the beast. After hearing your story, first I would say to be sure and rule out a bartholin’s abscess. We have had patients in the past who have had this issue but have gone undiagnosed simply b/c the abscess presented inward and not outward. Second, there are many pelvic floor impairments that could be causing your pain, not just pudendal nerve pain. So I can’t determine whether your symptoms are PN or not without evaluating you. I do recommend that you see a qualified pelvic floor PT. Below is a list of all the PTs in CO who have taken our class. Hopefully one of them can help.
Also, read this blog post to get info on what a “good” PT session is like. All my best, Stephanie
https://pelvicpainrehab.com/patient-questions/401/what-is-a-good-pelvic-pain-pt-session-like/
Hollenbeck Mary PTA Colorado Springs CO (719) 265-6601 [email protected] Orthopedic Rehab Associates
Neujahr Hollie PT Denver CO (303) 260-5092 [email protected] Nishimota & Neujahr Physical Therapy
Byrne Laurie PT Ft. Collins CO 9702211201 [email protected] Colorado Physical Therapy
Gerig Nel MD Denver CO 3033889321 Denver Urology Clinic
Brady Marie PA Denver CO 3033889321 Denver Urology Clinic
Waliser Thomas MD Denver CO 3038301181 [email protected] Minimally Invasive Gynecologic Center of Denver
Woodward Margaret PT Littleton CO 3037970988 [email protected] Motion On Main Street
Nishimoto Terri PT Denver CO 7204023801 [email protected] N2 Physical Therapy
Byrne Mary LaFayette CO [email protected] Advance PT LLC
Eral Laura Denver CO (720) 394-9453 [email protected] Kaiser Permanente
Fife Amy Grand Junction CO (970) 243-3061 [email protected] Western Colorado Rehab
Fries Elizabeth Denver CO (303) 260-5092 The Pelvic Solutions Center
Hoch Amanda Lakewood CO (303) 799-6336 [email protected] Providence Physical Therapy
Klein Lea Denver CO (303) 333-3493 ext 1 [email protected] Cherry Creek Wellness Center
Krum Laura Littleton CO [email protected] Providence Physical Therapy
Larson Susan Broomfield CO [email protected] Coal Creek PT
Mayerl Laura Colorado Springs CO (719) 365-1703 [email protected] Memorial Health System
McIntire Veda Colorado Springs CO (719) 200-3544 [email protected] Memorial Health System
Miller Jerri Louisville CO (303) 601-7495 [email protected] Pelvic Therapy Specialists
Mueller Angie Denver CO (303) 799-6336 [email protected] Providence Physical Therapy
Nangle Amie Denver CO (720) 402-3801 [email protected] N2 Physical Therapy
Nichols Diana Denver CO (720) 493-1181 [email protected] Specialized Physical Therapy
Raschke Kimberly Denver CO (720) 402-3801 [email protected] N2 Physical Therapy
Ressler Mollie Fort Collins CO (970) 377-1422 [email protected] Momentum Physical Therapy
Richardson Mary Boulder CO (303) 441-0452 [email protected] Boulder Community Hospital
Wendt Debbie Littleton CO (303) 467-4127 [email protected] Exempla
Wesley Michele Parker CO (303) 799-6336 [email protected] Providence Physical Therapy
Fascinating article. I am a 35 year old male from the UK who has had some mechanical trauma via a poorly fitted bicycle seat during some long distance rides during the months of June-August. From the last 50 mile ride in the middle of August, I have suffered from severe pain or burning in perineum, testicles, penis, along with mild pain in lower back, pelvis & inner thighs. The tip of my penis became numb for weeks after the 50 mile ride along with constant ED but is now intermittently numb or tingly, along with some minor ED. A major concern is the cold & tingly sensation I get in my testicles & penis when sitting, lying down, or standing stationary for any short period of time. Moving around or holding the problem areas seems to get the blood flowing again, but walking around seems to then become painful in my perineum after a few hours & I cant ‘hold the problem areas’ out in public. The colour of the tip of my penis is going grey / white when cold & the skin is going a blue colour until blood flow is returned. I sweat a lot during day & night, which is unusual for me & I am so stressed out by it all & not sure how much longer I can cope after this, losing my long term relationship & my home all in this year. I am concerned that this will never be fixed as my doc keeps insisting I have CPPS & that any potential nerve problems cant be looked at for two years & by then they cant do anything about it anyway. Im also concerned that the temperature & colour changes to my penis could eventually mean my penis turning gangrenous & losing it completely! From that description, is it possible that I have PNE?
Dear Andy,
I’m so sorry about all that you are going through. First, I don’t understand what your doctor is talking about that “any potential nerve problem can’t be looked at for two years” that makes no sense to me. Unfortunately, it is impossible for me confirm or refute whether you have PNE. My suggestion is to immediately see a urologist and a neurologist. Bill Tayler is an excellent physical therapist in Edingburgh and may be able to direct you to a physician who can help. His email address is [email protected]. Also, Marie Eliot is an excellent PT in London. She may also know of a doctor for you to see. You can find her info on this website here: http://www.simplywomenshealth.co.uk/.
In addition, we see patients often whose pain started from bike riding. PT can often help.
All my best,
Stephanie
Thank You for such an informative article.
When I think back, I have always had pelvic pains,seems as if they’re getting worse as I’m aging.
I’m a 32yr old woman and I have 3kids
I have been having a stabbing pain inside my vagina for a years now, the pain would be so painful it would wake me up in the middle of the night and it would dissappear as quickly as it came.
A few months ago I started experiencing a weird sensation around my vagina and anus it was mild pain at first but now its so bad I can hardly walk when the pain hits me. Yesterday while I was sitting on a steel chair I could feel the pain starting so I sat on top of my bag which helped stop the pain from progressing.
I’m now on painkillers(IBUPAIN;SANDOZ) to help me cope for now.
I have discovered that a warm towel inbetween my legs sometimes help when the pain’s too much.
PS:I’m starting to hate flying because it makes the pain worse when the plane’s taking off or landing.
I’m in South Africa,East London. If you know of any Dr that’s in this town kindly let me know
Dear Azola,
I’m so sorry to hear about all you are going through. I would recommend that you see a pelvic floor PT. We actually have a list of PTs from South Africa who have taken our class. See below. In addition, the PT you see will likely be able to recommend a physician that might be able to help with ancillary treatments such as nerve blocks, medication, etc. All my best, Liz
Avni Corina Cape Town South Africa [email protected]
Berry Christy Ann Bloemfontein, Free State South Africa [email protected]
Calvert Trish Parktown Gauteng South Africa [email protected]
Katzman Ruth Cape Town South Africa [email protected]
Loftus Tessa Stellenbosch (Near Cape Town) South Africa [email protected]
Moser Bettina Parktown Gauteng South Africa [email protected]
Raath Cecilia Pretoria (East) Silver Lakes South Africa [email protected]
Street Patricia Edenvale Gauteng South Africa [email protected]
Van Haweren Hester Johannesburg West South Africa [email protected]
Van Vuuren Antoinette Jonsen Pretoria South Africa [email protected]
Van Wyk Esta Bethlehem Eastern Free State South Africa [email protected]
Vd Walt Ina George, Mussel Bay, Southern Cape South Africa [email protected]
Venter Ilse Pretoria South Africa
Verbeek Helene Pretoria South Africa
Wilsdorf Annegret Cape Town (Northern Suburbs) South Africa [email protected]
Oh Stephanie…. I am in tears reading this. That there may be hope for me, somehow, some way. I am 6 days out from rectocele, cystocele, and cervix removal. I have been having tremendous pain from the surgery that my physician (uro gyn) is acting like it is not normal. At first I thought it was just typical pain from surgery but as days go by I am realizing I am getting worse not better. I cannot sit straight down and am currently having to lay down for the most relief. But the most troubling part of this pain is when I go to have a BM. I get this shooting, stabbing pain on the left side of my perineum that shoots into my buttock. It will stop me in my tracks. Almost like a spasm. (This is consequently how I know I need to have a BM) and then the same intense pain happens every single time I am on the toilet to have a BM. Or to be honest.. On the toilet in general. When I urinate I have to lean forward with my hands on my knees in order to do it pain free. Unfortunately I don’t have the liberty of doing that with BM. I have been going through this for 6 days and I cannot imagine someone doing this for years! Do I have my urogyn fix this? A neurosurgeon? Please point me in the right direction.. I want this fixed. 🙁
Dear Rachel,
I’m so sorry about all that you are going through.
I would recommend that you see a qualified PT. We see many patients like you who develop pain post-surgery. There are only two PTs that we refer to in GA; however, and I’m not sure if they are near you or not. If not, it would be worth it to travel to see them. Unfortunately, a lot of people are forced to travel for good PT. See below: All my best, Liz
Howell Lone PT Auburn GA 7709955242 [email protected] Physiotherapy Associates Lawrenceville
Hunt Jenny PT Alphretta GA 678-819-8720 [email protected] Provenance Rehabilitation of the Greater Atlanta Area
Sorry.. Forgot to mention that I am in Woodstock, GA just north of Atlanta. (30188).
Hi Rachel,
See the above reply.
Hi I wrote earlier about SSRI and PN. I have now been diagnosed with PN. When my PT palpates my right pudendal nerve it hurts bad and makes all the weird sensaitons I am having all the time. So she confirmed it is my pudendal nerve causing me all the trouble. I have had IC my whole life and always had urgency but it was only when I went on an SSRI for like 3 weeks did all this go crazy and I got all the PN symptoms along with my IC symptoms. My question is could the SSRI cause some type on central sensitization issue or chemical imbalance in the brain? Does anyone else on here have PN or IC that was made worse by or caused by SSRI use? Currently I take Gabapenitn with some relief. Thanks Kellie
Hi Kellie,
To my knowledge I have never known anyone to get an increase in neuropathic pain and/or more centralized pain after starting a SSRI. SSRIs have not been shown to be very effective in treating chronic pain like SNRIs or tri-cyclics have, but they should not increase pain. I hope this answers your question.
Best,
Liz
i have been diagnosed with pn and pne. i have received steroid shots for symptoms. i have also been prescribred ssri’s and snri’s, both of who made symptoms worse.
i have also been diagnosed with rls and pgad(or rgs. ssri’s and snri’s aggravate and worsen both rls and pgad.
i wonder if there is an as yet unidentified link among these three very painful, disturbing problems and if so, is it possible that ssri’s/snri’s could also worsen pe/pne?
just another aside: trazadone is a drug which absolutely worsens pgad. i wpuld be very careful about prescribing or taking it.
The symptoms of PN and PGAD are typically caused by multiple factors, including the musculoskeletal system and a central nervous system processing dysfunction. There is not evidence to suggest that SSRIs or SSNRIs make the symptoms worse.
Can you recommend any PTs that could help with a PN/PNE diagnosis in our area? We are finding little resources exist in Utah.
Dear Leanne,
The PT that we refer to in Utah is:
Monson Bonnijane DPT Salt Lake City UT (801) 587-7005 [email protected]
All my best,
Stephanie
Thank you for the article, very informative. Can you suggest a pelvic floor PT close to Everett Wa. I have been suffering with pn symptoms for two and a half years. It’s been miserable. Can they help me because I have no rectum. Taken out 23 years ago because of ulcerative colitis…Thank you Robert
Dear Robert,
Because I am not sure exactly where Everett is I’m going to send you all the PTs that we refer to in WA. See below: To your second question, I do believe a PT can help you even though you no longer have a rectum. All my best, Stephanie
Costello Kristen PT Federal Way WA (253) 944-4026 [email protected]
Franklin Elizabeth PT Maple Valley WA (425) 413-4425 [email protected]
Khadduri Lucie PT Lacey WA (360) 456-3300 [email protected]
Pazier Shannon PT Tacoma WA (253) 202-4838
Sieber Carrie PT Seattle WA (206) 354-9590 [email protected]
Vora Sagira PT Bellevue WA 4256885900 [email protected]
Gerber Nathan PT Othello WA 7083013102 [email protected]
Ferguson Carol PT Gig Harbor WA 2539852807 [email protected]
Wallace Kathe PT Seattle WA 2065272800 [email protected]
Gaddis Pamela PT Bothell WA 4254834270 [email protected]
Reicher Rebecca PT Seattle WA 2069859442
Nelson M. Quinn PT Dupont WA 2532849800
Wheeler Claudette PT Poulsbo WA 3607793777 [email protected]
Caples Kathleen PT Seattle WA 2064471570 [email protected]
Allen Tina PT Seattle WA 2065982889 [email protected]
Maas Peg PT Seattle WA 2062156596 [email protected]
Tolcott Jane Vashon WA (206) 744-1675 [email protected]
I have been struggling for nine months with pain and symptoms of PNE. What kind of doctor diagnoses this as I have seen so many and have been doing pelvic floor therapy for months. I have also had an epidural block and had some relief but it was short lived. I need to get to the right doctor in the new york area and the right therapists. Any help would be greatly appreciated!
Dear Nina,
There is a small group of pelvic floor specialists around the country, typically they are gynecologists, urologists or urogyns.
The pelvic floor PT that we refer to in NYC is Stacey Futterman. Here contact info is below. She may be able to give you the name of a physician. All my best, Stephanie
Futterman Stacey PT New York NY (212) 226-2066 Five Point Physical Therapy
Thank you for you response. I have been doing research all day with a friend. I have also found a pain management doctor in manhattan that specializes in various pelvic floor dysfunctions. His name is Dr. Kenneth Chapman. Has anyone heard of him? I have an appointment scheduled for next week. I will also follow up with your reccomendation. If anyone else knows of any other physicians or therapists in the tri state area please let me know.
Thanks again!
Dear Admin.
can you refer a physician and physical therapist around Lafayette La.
I am having tons of trouble getting group coverage to understand why I would need therapy.Dr I see have written letter.They give me therapy once a month for 6 months. Or possibly send me information to present to them.
Thankyou
Lc
Dear Lillian,
Below is the name of the PT we refer to in your area. I would recommend also that you read the blog posts on PT, such as this post:
https://pelvicpainrehab.com/patient-questions/401/what-is-a-good-pelvic-pain-pt-session-like/
Perhaps you can use some of the info in the post in your letter. Also, ideally, you should have therapy weekly for as long as it takes.
Best,
Liz
My pelvic pain, burning, itching, and redness all started this past July. I was diagnosed with bacterial vaginosis twice, cervicitis, and a candida glabrata infection. All treatments did not take my external symptoms away. My last culture came back negative but still my symptoms persist. I’m now pregnant (only about 4 weeks) and am scared that there are no safe treatments for this during pregnancy. I never had a vaginal infection prior to this vicious cycle of chronic infections. I’m not sure what I did wrong or different to cause this awful mess. I cry all the time and I’m so scared that I will never get back to normal. I live in Pittsburgh.
Hi Riley,
I’m so sorry to hear about all that you are going through. I did send you the name of a pelvic floor PT in your area and I think getting an evaluation from her will be a great idea. We do treat pregnant patients, but not all PTs do. Please let us know if you need another recommendation. We do see many patients whose pelvic pain is kicked off by vaginal infections and they do very well in PT. You will get better!
All my best,
Liz
Thank you so much for responding! I scheduled an appointment with a pelvic floor physical therapist that you recommended on Monday. I’m looking forward to getting an answer and relief.
Dear Admin,
My husband has a majority of these symptoms. We have been to urologist and back specialists who are at a loss for what to do. He has a very slight bulging disc at L5-S1 in which we just had a nerve block/steroid shot for, on the outside chance it would help. It did not. We are trying to figure out what to do next. Would you know of a doctor or a physical therapist in Arkansas that would be able to help us?
Any help would be greatly appreciated!
Thanks!
Lori
Dear Lori,
We do know of a PT in Arkansas. See her info below: She may know of a doctor who is knowledgable about pelvic pain.
Gibson Mitzi PT Little Rock AR (501) 224-5454 [email protected] Advanced Physical Therapy
Also, here are two articles that your husband might be interested in reading, one is on male pelvic pain and the other is about pelvic floor PT:
https://pelvicpainrehab.com/male-pelvic-pain/460/male-pelvic-pain-its-time-to-treat-men-right/
https://pelvicpainrehab.com/patient-questions/401/what-is-a-good-pelvic-pain-pt-session-like/
All my best,
Liz
Thank you so much!!
Thank you from the bottom of my heart for putting a spotlight on pudendal neuralgia issues/pelvic floor pain issues!! I woke from pelvic floor reconstruction surgery in Oct. 2006 in unbearable and excruciating pain mainly on the left-side of my groin, rectum and the inability to lift my left leg(initially needed due to a very troublesome rectocele, but upon examination from the regional “master surgeon”, I also had a cystocele and vaginal vault prolapse). I was told it was normal, I must have a low pain tolerance, then my surgery was very involved and difficult and I needed to give my body time to heal. Some symptoms eased, but never went away especially pain with BMs, sitting “too long” (more than 10-15 mins), standing too long, walking to long(especially if there was any kind of incline), pain with intercourse and some others. Since I described a lot of rectal pain and pain between vagina and rectum, I was sent to my GI by my PCP (since the Uro/Gyn surgeon wasn’t at all helpful). After a colonoscopy, a defagram and a MRI, my GI referred me to Mayo in Jax. There I saw a colonrectal surgeon, who immediately said I needed a different MRI and to be referred to the Gyn dept. There I was told that I had a recurrence of my rectocele, but wasn’t a candidate for additional surgery though I was a good candidate for a study they were doing for trigger-point injections to relieve pelvic floor dysfunction/muscle-spasms. I was also referred to a pelvic floor pt. Though the extremely painful procedure of at least 6 trigger point injections delivered through the vaginal wall was not helpful and once I reported back to the doctor that I experienced no relief, I never, ever could get the doctor to call me to discuss the next move for my treatment…the pt was a lifesaver. She asked for my surgical notes so she could consult with a pelvic floor pt specialist she had trained with and I obliged. At my next appointment, she told me that upon consulting said specialist, that it seemed (based on her findings of her internal exam of me and reviewing my notes) they were in agreement that I should return to my original surgeon and that he should be able to release a stitch or the mesh that was pulling on my ligament that the pudendal nerve ran through. I made such an appointment and explained what I had been going through…was honest about seeing GI and the 2 doctors at Mayo…and told him that since he was familiar with my case that maybe he could help me with eliminating my pain. His response…he had no earthly idea why I was having pain and maybe I should see a colonrectal surgeon and he’d make a referral and wished me the best of luck!! I never got that referral, but based on the info the pt provided I started searching online and found Dr. John Miklos in Atlanta. He asked me why it had taken me so long to get help and I explained the road that lead to him…he was flabbergasted, but not surprised. His internal exam about sent me flying off the table because of the pain when he pressed on “a tight band” that ran along the left side of my vagina…the mesh was too tight. He did mesh removal surgery, but cautioned me that since the nerve had been compromised for over 3yrs, the nerve damage could be permanent. Sadly, I received no relief from that surgery. I’ve since had another surgery to remove most of the remaining mesh, I’ve had CT-guided nerve blocks done in my low back, PN nerve blocks done, I’ve seen a GI/Neurologist would also diagnosed rectal disinertia (not sure of spelling, but that the muscles were working against each other “making it like pooping against a brickwall”, thus an inoperable rectocele), and nerve damage to about half the nerves required to have an effective BM. I would love nothing more than to be seeing the PT I had been seeing, but can’t because I can’t drive the hour it takes to get to Savannah. But you may like to know the name of this PT, which is Cathy Ey and she works at Memorial Medical Rehab Ctr in Savannah, Ga. Also, my 3rd surgeon is Dr. Brent Parnell in Augusta, Ga and one of his offices is at what was formerly Medical College of Ga (can’t think of the new long name), but he also has pelvic floor PTs that he works with in Augusta.
Also, Beaumont Medical Ctr in Royal Oaks, Michigan has a Dr. Kenneth Peters in the Urology Dept of their Women’s Center that is making strides in relieving pelvic pain issues with Pudendal Neuromodulation, as well as what sounds like a wonderful pelvic pain multidisciplinary team which includes pelvic floor pt and guided imagery for relaxation.
I wish there were more medical professionals that took a sincere interest in helping others like myself, especially more that were closer to where I lived thus making it more accessible for me to get more assistance with my health issue. More professionals like yourself and your colleagues are needed in more areas of the US!!
THANKS FOR WHAT YOU ARE DOING!!!
Dear Suzanne,
I’m so sorry about all that you have been through. You are not alone. So many women have suffered similar complications due to mesh surgery. In fact, next week we will be publishing a Q&A featuring two gynecological surgeons who do many mesh repair surgeries for that very reason. I hope that you will not give up on your search for relief.
All my best,
Stephanie
Your story is very similar to mine. Have you had any relief in the last months? I certainly hope so and I’m glad to have “met” someone who has been through an experience like mine.
Dear Suzanne, Your story is so similar to mine. I finally got some longer lasting relief. I had pudendal nerve ablations in January. It took about 2-4 weeks for relief to start to come and 6 weeks for about 50-70% pain relief. It’s May and I still feel good. I’ve been able to make better progress in physical therapy and my PT is impressed with how much it has helped. Dr Chris Russo at Javery Pain in Grand Rapids, MI is the pain doctor who I saw and will see again for this procedure. I hope that you have found some relief and don’t need this info, but if you do, it’s here. Take care! Brenda
Thank you so much for this wonderful article! Very informative and extremely useful to understand this debilitating condition.
Do you know of a doctor who performs Botox injections into the obturator internus in the northeast? I have confirmed obturaror internus muscle spasm (through a neurography) and the doctor who did these injections for me in the past retired. The pain is back and I really need to find a doctor who has experience in doing these procedures. I desperately need to find someone in MA preferably, or NH, RI, CT or even NY.
Thank you so much for your efforts in helping all of us patients. We all appreciate it immensely.
Dear Jane,
Thank you so much for the kind words!
I’m so sorry, but unfortunately I do not know a MD who does Botox injections in the northeast. I would recommend asking a pelvic physical therapist in your area. She would probably be your best resource. Below are two PTs that we refer to in MA; perhaps one of them can point you in the right direction. All my best, Liz
Wade Marie PT Framingham MA (207) 779-2256
Lewis Elizabeth PT Gloucester MA (978) 761-3149 [email protected]
I think I may have a pudendal nerve issue. I have been in touch with Dr. Conway and am anxiously awaiting a telephone consultation with him. Is there anyone “out there” who can guide me – I want to see my PCP and try to get some tests ordered BEFORE seeing a gynecologist. (I found one in center city Phila (PA) and have an appointment on 1/31/2014). I feel as if I am so close to getting answers but the waiting is horrific.
Dear Joy,
I’m not sure what you really mean by “guide” you. Have you seen a pelvic PT? What type of tests are you going to get from your PCP? Have you seen your regular gyn? I’m sorry, but I don’t have very much information to go on. In any case, I’m sure Dr. Conway will call you soon.
All my best,
LIz
Hello!
I am so happy that I came across your article! I am a young women who has been experiencing the sharp stabbing vaginal pain described here since I was a kid. The pain can occur randomly or during physical activities such as running. I also find any sort of insertion or contact unbearably painful– seriously a q-tip will leave me crying. I had a leg length descrepency of 3 inches ( even after lengthening one leg is shorter by a little over 1/2 an inch), and I also have dysautonomia which causes abnormalities within the autonomic nervous system. Do you think I could be experiencing PN, and if so could you recommend anyone in Texas?
Thanks,
Stella
Dear Stella,
I can not say without examining you what is behind your symptoms. But you do sound like a good candidate for PT. Where are you located in Texas?
Primarily in the Austin area but I would be willing to travel to Houston or Dallas if need be.
Dear Stella,
There is actually a very good PT in the Austin area who I have shared a patient with in the past. Her info is below. All my best, Liz
Sauder Sara PT Austin TX (512) 335-9300 [email protected] Sullivan Physical Therapy
Great article!! My story. Stress fracture, sacral ala mid-August this year. Not diagnosed until Sept. Occurred on vacation alone and used towels to support butt in car as I drove for hours and days after break…maybe compressing something then. Rested some after mri in early Sept. showed break…and then limited lifting and bending. Returned to work (teaching) early Oct. standing brought on distinct and progressively prominent “poking” feeling in left rectum, which kept increasing over time. Ignored it and it kept growing. Started to bend again at waist as I grew stronger around the bone. Early Nov., started to have spreading superficial allodynia/hyperalgesia on left labia while sitting at choir (hard seats..3.5 hours) that persisted after rehearsal. Began to guard against sitting. Regardless, started to have more discomfort sitting. Appointed to new public service committees. Nov. 20th sat in evening meeting for three hours. Tried to fidget…but could feel more symptoms in “front”. Next day, all forward bending brought on “tractioning/pinching” feeling of excruciating pain in urethra/vaginal area..wall. Symptoms increased rapidly since then. Now rectal lump sensation always there but ignorable. Urethra/vaginal pain disabling and posturally crippling. Can not sit (at all) and can not drive. Tried to sit through Thanksgiving dinner and was in sheer agony and sideways. Can not get inflamed “crotch” to settle down..as any movement and even lying down irritates it. can not sit or do any bending. Live alone and now in just a few short weeks can not work, drive, take care of house etc. or socialize. Have been reading about PNE or PN for weeks. Horrified and distressed that no solution exists. No physicians here understand it or do surgery. My question: does pelvic pt help even if you do have an entrapment as I may on that broken sacrum side? Do drugs like neurontin, Lyrica, Cymbalta help, and most important….can I do something myself (short on traveling on my back I guess to Arizona, anew Hampshire or France for surgery that I’ve yet to read helps) to “fix” my “entrapment” (which seems impossible to diagnose) or my neuralgia/neuropathy? The unrelenting pain in my urethra is literally killing me. Also and new, my legs now are weak and ache when I stand…as if the neuropathy has spread down my leg. Is there hope?? thank you!
Dear Rachel,
I’m sorry to hear about all you are going through. Yes, there is definitely hope. You need to go and see a good pelvic floor PT and also a physician who can prescribe any medication that might help you. Where are you located? Perhaps we can give you the name of a PT in your area.
Best,
Liz
thank you!!! I will contact them. can’t thank you enough for this webpage and for helping us all!
I have a prolapsing bladder (it is still inside) and Interstitial Cystitis. I was off my Elmiron for about a year, but my urologist thinks my new, periodic urinary urgency could be a flare up of the IC so I have restarted it. I used to take Cymbalta and Lyrica for nerve damage following an ovary removal and it worked great. I have had a few very brief episodes of clitoral pain this past year, and tonight it has lasted for seven hours. I saw in your wonderful article that Lyrica and Cymbalta have been know to work for PN. As one of the symptoms of PN is clitoral pain, is it possible that those medications could work to end or lessen my clitoral pain? I greatly appreciate your taking to time to read my questions and thank you for helping in any way you can. Also, I live in a tiny town called Yuma, in Arizona. I have seen specialists for various things in Phoenix and the San Diego area, as there is no one here who has more than a basic gynecological practice.
Thanks again,
Shannon
It’s Shannon again. I also have a coccyx that continually gets misaligned, and I don’t know if it’s because of that or my nerve damage or the IC, but I’ve started having sharp pain down the inside of both my thighs, and my left labia has the same tingling pain I had after the surgery that caused the nerve damage. Thanks again.
Hi Shannon,
I’m so sorry for all that you are going through. We do know of patients who have tried those medications with success for their clitoral pain.
All my best,
Liz
Thanks so much for your answer. I greatly appreciate it.
Wonderful article!
I have a question. Around year ago after some yeast infections and prolonged sitting periods I started feeling burning around my anaus/vulva. Since then the pain covered my thighs and after a few months I got a lot of muscle pain (I am sure it’s because I continued long sitting hours hours because the pain increased with sitting, every week was worse until the point I had to give up my work). It was around 2 and half months ago. Since then I am not able to sit for any amount of time. I found a pelvic floor Physiotherapist in London and she’s worked with me since then every week. She said I had shortened and tight muscles, and some fascia restrictions with a lot of trigger points. We have worked only externally. Once intravaginally made my burning extremely bad for a couple of days. also do stretching exercises – 3-4 times a day. I do some walking too. I have been diagnosed recently with both sides piriformis syndrome by some other physio. I am worried because I don’t see any improvement with my ability to tolerate sitting (after one minute I sit my pudendal burning increases so much and that worsens my piriformis syndrome very much). In the beginning of our treatment I only had problems on the left side, but the right side has been bad for some time. For most of a day I stand, but my legs are getting really weak. Worth mentioning – there are better days when my muscles are not so bad and then I don’t get almost none nerve burning pain, but whenever I have muscles pain my burning (neiropathinc pain) increases too. I had anal cryptitis and fissure surgeries a couple years ago, but MRI doesn’t show anything now apart of ovarian cysts.
I am a bit of reluctant to take medications ( I am on baclofen and tiny dose of Lyrica, but they give me constipation and I am tapering the doses). Also I have a feeling i want to do it on my own without meds. But maybe I am not correct. I am also afraid of the nerve blocks. I am so over sensitive now. It seems like the pain is spreading. I try not to give up but even I do everything I can I don’t see much hope. Would you have any advices of what I can do?
Dear Bunny,
I’m sorry that your suffering. It’s quite difficult for me to make recommendations on what kind of treatment to pursue since I haven’t evaluated you. However, for most complex pelvic pain, I would recommend a combination of physical therapy, behavior modifications (limited sitting, or using a cushion, for example), and pain management (medications, possibly trigger point injections, possibly botox, possibly nerve blocks). These treatment options are fairly benign, meaning, they likely won’t make your symptoms worse.
All my best,
Liz
Any place I can go in Calgary, Canada for help.
Prior to having Laproscopy surgery for Hiatial Hernia in
Oct.2013 I have had constant pain or burning sensation around
my Anus and Vagina. I have had seven different types of pain
medication with none of them helping at all.
Infection has been ruled out so I believe it is some kind of nerve damage. Before my surgery nothing like this existed.
About a week after the surgery is when the burning began.
Would like to hear from you ASAP as the situation is very
debillitating.
Thank You
Dear Sylvia,
Below are the three PTs we refer to in Calgary: Best, Liz
Ellis Kira PT Calgary, Alberta Canada 403-249-5253 [email protected]
Lazareck-Devlin Alana PT Calgary, Alberta Canada 403-288-8877 [email protected]
Rahman Safa PT Calgary, Alberta Canada 403-943-9900 [email protected]
Hello Stephanie.
Thank you SO much for the work you do
I am 62 and 5 yrs ago had surgery for a Tehered Spinal Cord
Following this rare surgery in adults and lucky enough to be here in Louisville with a surgeon who could work with Tethered Spinal Cord, I was diagnosed with PFD, PN and Valvodinia..
This week I learned from my dr visit that the vulvodinia is managed well using a compound medicine and other self care.
I am looking for a new Dr in Louisville, preferably a woman who could help me with PN as the pain is in my right buttock muscle and sacrum area, with rectum spasm and constipation and I am concerned to have someone who encourages acupuncture and a personalised medivine dose.
The nerve block seems only to irritate the nerve more
Again, thank you for all the work you do.
Dear Theresa,
I’m sorry, but we don’t know of a doctor who specializes in pelvic pain in Louisville; I would recommend that you join the online group Happy Pelvis and pose your question there. The members are from all over the state and someone my have a recommendation for you.
You can find HP here:
http://groups.yahoo.com/neo/groups/happypelvis/info
Also, there is a PT group in Louisville that specializes in pelvic floor PT; perhaps they will have some info for you. The info is below:
Dunn Susan PT Louisville KY (502) 899-9363 [email protected] Dunn & Associates Physical Therapy
Best,
Liz
This was very interesting and informative.
I am going to a pain clinic for chronic pain which no one seems to know what is causing it. I have pain on the right side only of the vulva area and the uretha. It hurts when i sit or stand for long periods and when i step down with my right foot. The pain is usually stabbing but know it is mixed with burning too. I have tried traditional medications but they don’t really work. I am going to have a nerve block shot, but now that i’ve read this i don’t have much hope that it will work. Does this sound like a pudenal nerve issue. If so can you recommend a doctor in the chicagoland area that deals with this. This pain is never endind and it affects my whole life.
Sincerely,
Christi Parra
Dear Christi,
I’m sorry about all that you are going through; however, there is some good news: you live in a city that has one of the best community of providers treating pelvic pain in the world. The two providers that I would recommend are Dr. Colleen Fitzgerald (she is amazing) and Rhonda Kotarinos, who basically developed pelvic floor PT and is also amazing. There info is below:
http://loyolamedicine.org/people/colleen-fitzgerald
http://www.rhondakotarinos.com/
As to your question about whether your symptoms could be caused by PN; I’m sorry but without evaluating you there is just no way for me to answer that question; there are many many issues that can cause pelvic pain and it’s to your medical team to pin them all down.
All my best,
Stephanie
I just had an MRI that shows entrapment of my nerve and my main symptom is increased sexual arousal is there hope for fixing this and if so by what method?
Dear Reader,
An MRI can not show entrapment of the pudendal nerve. I would give this blog post about PNE a read as it explains how it is diagnosed.
In addition, I would recommend that you see a pelvic floor specialist and a pelvic floor PT; where are you located? Perhaps we can refer you to someone in your area.
Best,
Stephanie
I have many of the symptoms listed in your blog. I have been treated for a labial inflammation and asymptomatic UTI with no relief in symptoms. I have also been prescribed Neurontin 100 mg TID. I have been treated by my PCP and my OB/GYN. PCP believes I have vulvadynia while OB/GYN feels my symptoms are all related to menopause. However, I have been menopausal for 9 years with no symptoms. Symptoms only began after the company I work for demanded I get healthy with jogging, cycling, walking,etc 12,000+ steps a day. My symptoms started after 1 week of riding an exercise bike for a couple of hours each night. I would literally get off the bike and have an absolute numb butt. I have a constant dull ache which feels better if I lay down or put pressure against the clitoris. Would PT benefit me? If so, could you recommend one in central North Carolina?
Kathy
Dear Kathy,
Below are all the PTs that we refer to in NC:
Wegmann Emily PT Raleigh NC (919) 571-9912 [email protected] Carolina Pelvic Health Center
Blue Paige PT Southern Pines NC (910) 235-2713 [email protected] Pinehurst Physical Therapy
Young Wilda PT Greensboro NC (336) 275-6380 [email protected]
Casciere Michael PT Greensboro NC 3366841187 [email protected]
Briggs Jennifer PT Raleigh NC 9195719912 C.A.W.H. Rehab
Best,
Liz
I began experiencing severe pain in my left side and extreme urinary symptoms (urgency and frequency) 7months ago. I was treated for urinary infection, uretheral syndrome for 3 months, but nothing helped. At the original visit for my symptoms the urine was not cultured so the diagnosis was difficult when I went to a urologist. The symptoms got much worse after my period. My GYN decided that the uterus was prolapsed and as things “swelled” each month it was pressing on my pudendal nerve. I had a vaginal hysterectomy this past August. After I got passed the pain from the surgery these symptoms subsided. In October I developed a yeast infection and have taken 20 diflucon at this point to clear it up. Now I have begun experiencing burning in the vaginal area and some discomfort when sitting. My GYN prescribed amitriptilyn (10mg) daily. I began taking these 4days ago. My question is….could this pain be a temporary side effect of the hysterectomy? or a chronic issue?
Thank you
Dear Lisa,
I’m sorry about all that you are going through. However, it’s impossible for me to answer your question. I will say that based on your history: surgery and a long lasting yeast infection (were you cultured for the yeast infection? Pelvic floor issues often mimic a yeast infection) you very well may have developed pelvic floor impairments, such as tight muscles and or trigger points. My best advice to you is to see a pelvic floor PT. Where are you located? Perhaps we can refer you to one in your area.
Best,
Stephanie
I am 68 years old, was diagnosed with MS at age 35. Have had very little trouble until about 8 months ago when I developed trigeminal neuralgia. i took tegretol which helped, but began to have epigastric pain, so discontinued it. One day, after exercise in pool (leg splits in and out, and back and forward), I came in and was struck with sudden, severe, vaginal and rectal pain. It then localized to rectal pain, which I have had for 4 months. Had EUS with diagnosis of gastritis, chronic pancreatitis, H pylori.
Gastro dr. said I would just have to suffer and take tramadol. Have found a pain management dr. and am on tramadol 100 mg twice a day and 500 mg neurontin three times a day and clonazepam .25 mg at bedtime. Colonoscopy was normal. Pain in rectum can be severe and hurts more on left side of rectum. Don’t know what to do next. I am a retired nurse, and have searched for an answer as to what my diagnosis is. Do you have any ideas? Could it be connected to MS, or did I pull something the day it started? I would appreciate your input.
Dear Marion,
I’m so sorry to hear about all you are going through.
I’m sorry but without evaluating you I can’t tell you what is causing your pain; if you read our blog, you’ll learn that there are a myriad of issues that can cause the type of symptoms you are having. I would recommend that you visit a pelvic floor PT in your area. Where are you located; perhaps we can refer you to someone near you.
All my best,
Stephanie
Have stinging sensations on buttocks and thighs after period. Bruised feeling in groin at times too. Lasts a couple of days.
Was diagnosed w/ cystocele and rectocele and am awaiting surgery. Would I benefit from PT instead? If so, I live by Salina, KS. Are the symptoms related to diagnosis?
Hi Lisa,
We recommend that patients in your sitation seek conservative forms of treatment prior to any invasive procedure. Pelvic physical therapy can help you to strengthen your muscles in order to prevent a further collapse of the organs. Additionally, there are other non surgical options such as a pessary or sling that can help keep the organs in place. However in cases where the rectocele, and cystocele are severe, surgery should be an option to consider. Below are the therapists that we recommend in KS.
Rose Lott, PT
Rebound Physical Therapy
(785) 271-5533
Heather Shire, PT
Lawrence Memorial Hospital
(785) 760-1850
Lindsay Voight, PT
Saint Luke’s Hospital South
(913) 317-7341
All my best,
Malinda
Hello, I am male and have suffered pain in the perineum for years but lately it is getting worse.It is stabbing, sharp and nasty ! My doctor takes no notice when i mention it .No idea what to do now.Cant afford to go private.
Dear Bob,
I recommend that you see a pelvic floor PT; where are you located? Perhaps we can refer you to one in your area.
Also, this is an article on male pelvic pain that you might find informative:
https://pelvicpainrehab.com/male-pelvic-pain/460/male-pelvic-pain-its-time-to-treat-men-right/
All my best,
Stephanie
Thank you for this article. I am currently researching different aspects of my pelvic pain. I have received a nerve block to three pelvic nerves- the hypogastric, ilioinguinal, and genitofemoral. This has resulted in a reduction of some of my pain. I have noticed after these blocks that I also have burning, and some sharp pain in the areas innervated by the prudendal nerve. I have not yet been diagnosed fully. I am awaiting a surgical consult to rule out endometriosis and adenomyosis. My pelvic pain gets worse with menstruation and during menstruation I am having labor like pain. I am wondering how often the prudendal nerve is implicated with endometriosis. How do you differentiate between pelvic pain caused by endo and adeno vs other reasons for pelvic neuralgia? Thank you. Your help would be appreciated.
Hello Mary,
To answer your question, I will need a bit more information. From your original post, you don’t reference receiving treatment from a pelvic floor physical therapist. Has internal manual therapy been part of your treatment?
Best,
Malinda
Could you recommend a PT in the Oak Park, il area please?
Dear Donna,
The info for the PT that we refer to in Oak Park, IL is below. Best, Liz
Markett Kristen PT Orland Park IL (708) 671-1971 [email protected] Flexeon Rehab
Dear Donna,
We do not know of a PT in Oak Park; however there is an amazing PT in Chicago that is worth the drive; she is one of the best in the biz!
Her info is below:
Kotarinos Rhonda PT Chicago IL (630) 620-0232 [email protected]
Best,
Liz
Hello
I had bilateral surgery for pne in Nantes France in 2003. This folowed a period of over a year of loss of sensation/orgasm and pain in the perineum and genital area. After surgery I got pretty much 100% better. I got on with my life and I no longer needed my thoughts in that area. However at Christmas I stupidly exercised too heavy (parallel squat) with poor form and I also lost my job. I have had some malfunction since e.g. burning in anus, ed, constipation, and a feeling of congestion in the perineum/pelvic floor. I dread to think i have got pne again. I have been very run down. Please advise.
Gary
Dear Gary,
I’m so sorry to hear about all that you are going through. Without evaluating you, however, it’s impossible for me to give you insight into what is causing your symptoms. I recommend that you see a qualified pelvic floor PT for an evaluation. Where are you located? Perhaps we can recommend one to you in your area.
All my best,
Liz
I am in the uk.
Hi Gary,
The PT that we refer to in the UK are Maria Elliot in London at: http://www.simplywomenshealth.co.uk and Bill Taylor in Edinburgh Scotland at: [email protected] Taylor Physiotherapy Sports Injury Clinic
All my best,
Liz
Wow, what an enlightening article. 10 weeks ago I had pelvic reconstruction surgery without any mesh or porcine grafts at all. I’m still having a lot of pain and discomfort with everything actually, especially sitting or standing. That doesn’t leave a lot of room for living. I thought I was just still healing until things seemed to be getting better and then suddenly took a turn for the worse. I don’t think it’s normal to start feel worse when you’re healing? I went to PT for the first time today. She said it was definitely pudedal nerve. She said if it was caused from the pelvic region then she could help me, but that if they hooked my nerve while tacking up an organ, then her work would not be helpful. I was hopeful until I read your article. Now I feel certain I have PNE. When I woke from surgery, I was screaming in pain. I even asked why I was the only one in the recovery room that was screaming and crying. They doubled my pain med and it dulled the pain a bit, but did not get rid of it. Seven days later, in the doctors office, when they touched my pelvic in one area that had not even been cut, I felt extreme burning pain. That area still hurts today – I found out just how much today in PT! I don’t have pain with a BM, but I do have pain afterwards. Lots of pelvic pressure and heaviness and a most certain feeling of prolapse again, although they tell me there is no prolapse.
Does this sound like PNE to you? If so, is there any chance of recovering without surgery? Is surgery always successful? Who does this type of surgery? Is it very dangerous? Is one procedure the culprit, or could PNE be caused by any pelvic repairs (I had them all except for enterocyle).
You mentioned respiratory problems being associated. I have had respiratory problems since surgery (stridor and gasping for breath is one symptom, and it is involuntary and happens a lot while sleeping. Shortness of breath is another symptom.) Could these really be associated with pudenal nerve?
The plan for now is more PT and watch for improvement. Your thoughts and input would be greatly appreciated. I need all the help I can get and it’s so hard to find people that understand this problem. Thanks.
Dear Marie,
I am so sorry about all that you are going through. I understand how frustrating and scary all this can be. But, I’m sorry, there is just no way for me to speculate about the causes of your pain without evaluating you myself. That’s because there are countless impairments/issues that can cause your pain. As far as PNE and the decompression surgery goes, I recommend that you read this Q&A series that we did with the two top surgeons who treat the diagnosis; I believe these blog posts will answer all of your questions about PNE and the decompression surgery:
https://pelvicpainrehab.com/pelvic-pain/1893/pne-your-questions-answered/
https://pelvicpainrehab.com/pelvic-pain/1901/pne-your-questions-answered-part-ii/
All my best,
Liz
Dear Marie,
I’m so sorry about all that you are going through. I know how frustrating pelvic pain can be. I’m sorry, but even with this description of your symptoms I can not speculate about what is causing it. That’s because there are many issues and even combinations of issues that can cause the symptoms you are describing. That said, we have recently posted two blog posts about PNE/the decompression surgery by two of the top surgeons treating the diagnosis that I believe will serve to answer the questions you asked about them. Take a look at them below:
https://pelvicpainrehab.com/pelvic-pain/1901/pne-your-questions-answered-part-ii/
https://pelvicpainrehab.com/pelvic-pain/1893/pne-your-questions-answered/
The physicians quoted in the articles are among the best in the business, so if you’re looking for a physician consultation they are a good place to start.
All my best,
Stephanie
Think you for your reply Stephanie. I read the entire interview blogs while you were responding. They answered a lot of my questions. Unfortunately, there are questions that they admit there are no answers to.
You give me a bit of hope. I felt like I had certain PNE given that my symptoms are a result of surgery and because I awoke from surgery in such pain. Sounds like you believe there is non-surgical hope for me. With PN there is a good chance of 100 % recovery, right?
Is it abnormal to awake in the recovery room in intense pain?
Dear Marie,
With the proper treatment approach, yes, patients with PN do get better. As for waking up in the recovery room in intense pain, that’s a hard one for me to answer. I would say it depends on the surgery and the patient’s condition. But, we do see many post-surgical patients here at PHRC. Best, Stephanie
Hello,
For the past month I have been experiencing episodes of sharp pain that seem to come and go. I have seen my regular doctor twice, as well as a gynecologist, and in the midst of all the confusion, I am just hoping to receive some answers. After evaluation, the gynecologist indicated that he believed the source of my pain to be coming from my pudendal nerve. My regular doctor seemed dumbfounded by the symptoms I was presenting her with, but thought it sounded nerve-related, so she believed an MRI would be my best bet (as well as prescribing muscle relaxers). However, the MRI was later denied by my insurance company.
I am only 22 years old, I don’t recall injuring myself, or doing any sort of activity that could have triggered this pain response from my body. I am incredibly nervous, and am looking for some help. I guess I am looking for something positive to keep my spirits up, since most posts I read regarding PN are incredibly pessimistic. Do you think since my symptoms have only been present for a month that I may have a greater chance of positively responding to treatment? I was also wondering if you knew of any doctors in the New Jersey area (I live in Northern New Jersey) or any specialized physical therapists who can help me with my pain? Any help would be greatly appreciated! Thank you so much
Sincerely,
Jaclyn
Jaclyn,
Yes, the fact that your symptoms are only a month old and your youth are two things that are very much in your favor as far as making a complete recovery. Steer clear of the scary PN posts! First of all, PN is a symptom not a diagnosis. Second of all, there are many issues that could be causing your pelvic pain other than an irritated pudendal nerve. A good pelvic floor PT can do a complete evaluation and let you know if there are any findings that could be at the root of your pain. Below is a list of PTs who took our course in NJ. All my best, Liz
Herzig Niva MS,PT Englewood NJ 201-568-5060 [email protected] Core Dynamics PT
Besante Jamie PT Beachwood NJ (609) 978-3110 [email protected] Southern Ocean Medical Center
Dela Rosa Michelle DPT Columbus NJ (609) 379-0900
Ryan Angela MD Englewood NJ 2015672277 [email protected] Physical Medicine and Rehabilitation Center
Ely-Maskal Nancy PTA Englewood NJ 2015672277 [email protected] Physical Medicine and Rehabilitation Center
Liz,
Thank you so much for delivering a resourceful response in such a timely manner! My gynecologist gave me a prescription to have a transvaginal ultrasound preformed, (because that is a necessary step in order to have an MRI done). Do you think this is necessary? Or do you think I should forego this step and contact Angela Ryan MD for an evaluation (as she might have better insight regarding my symptoms)? Again, thank you for the information, and support, it is greatly appreciated!
Sincerely,
Jaclyn
As I am sending you this email, I am down on my knees in front of the computer and I have been on them several times praying for relief. My viginia burns and hurts all the time when sitting or laying or any kind of compression. I have had this ever since my first child was born. I think the nerves were damaged during childbirth. Please advise me as to where I could go for a diagnosis. I live near Jackson, MS or Hattiesburg, MS. My life is not worth living like this.
I have been all around my area trying to find some doctor that could help me. No doctor has ever suggested for me to see any any other doctor. Please help
Thanks,
Hello Hilda,
I am sorry to hear about your situation. It is difficult to say whether or not your symptoms are related to nerve damage. Your nerves may have been irritated during labor, but it is also likely that impairments in your muscles, and joints are also contributing to your pain. We do not have a recommendation for therapists in either Jackson, MS or Hattiesburg, MS, but I can recommend a few therapists in nearby states.
Best,
Stacey
Hi….Lifesaving info…..My story is incredible….I have had 15 surgeries and even a coccygectomy trying to stop this pain….I dragged my unbearably painful butt around for 3 years playing piano for so many hospitalized and elderly people hoping to put smiles on their faces….Finally I gave in to the pain 4 months ago praying to find an answer. I just was released from Yale NH Hospital after seven days with them saying,,,you have some kind of nerve issue where the obturator internus is. This is why you have pain there and in your anus. It’s just too bad you’ll have to learn to deal with the pain as there is nothing we can do. There are no treatments for this so you’ll never walk or play piano or sports or even have sex without terrible pain ever again. Just accept it. Yes this is what they said to me today…
You have given me hope again…especially with the article regarding the botox injections as they may work for me considering the muscle involved and the pain right across the pudendal nerve. I have constant unbearable pain in that area and in my anus…It switches….3-4 days one place 3-4 days the other.
Pain lessens while sitting on a toilet seat….Pain is completely gone when constipated for several days. For some reason a buildup of stool removes all the pain and I run my tail off on those days…..ever hear of this?…
My biggest problem now is finding the right DR to find the best treatment for me,,,,,I live in CT,,,,,,Do you have any leads to who I can see in this general area….I have to get better before I mentally break and I am there already.
Thank you so much for your blog,,,,Please write back asap….Al
Hello Al,
I am sorry to hear that you are in so much pain. We do not have referrals for your area, but if you able to travel elsewhere I may be able to recommend a therapist.
All my best,
Liz
Hi
I wrote once before. I had PN decompression surgery in France in 2003 following 2 years of constant pressure in the pelvic floor, as well as ed, sitting pain etc.
At Christmas, I stupidly squatted with 90kg and the symptoms returned. I also got Herpes HSV1 at the same time.
Have I just damaged the pelvic floor i.e. sent it into spasm and/or strained the area? I feel a sharp tingle in the anal area and a congestion in the perineum.. however,m unlike before I have full control of the pelvic floor muscles (I can kegel), which I couldn’t before back in 2001/2002.
The doc who did my surgery says it may be PNE again and talks about how he has performed surgery on a couple of patients twice…
Have I got PNE again? I am confused.. if PNE didn’t exist why did I get better for ten years following surgery? And how unlucky would I be if I got it twice? And if lifting too much weight in the gym was likely to cause this (again) then surely men all over the world would be getting this every week?
Please help…
Hi Gary,
Thank you for your email. I apologize that we did not respond in a more timely manner. Somehow your email got lost in the shuffle.
Hopefully by now your symptoms have resolved. I think what likely happened was the nerve became irritated with the heavy squat which maybe then made some of your pelvic floor muscles become hypertonic (tight), both of which can cause the symptoms you’ve described. I do not think you got re-entrapped. One activity/exercise/episode is not going to cause a re-entrapment. It could cause a muscle injury or neural irritation, both of which can take a long time to lessen, especially given your history.
Again, I am sorry we didn’t answer your question earlier. I sincerely hope your symptoms have long since resolved.
Best,
Liz
I have burning and pain in anal rectal area radiating to vagina. It is non-stop for two years following spinal cord surgery. I sit on donut pillow with ice 24/7. Have been to every Doctor who say nothing is wrong. I feel like I have a foreign object in my rectum. I have no life! People seem to think I am crazy! PLEASE help me if you can! I am becoming hopeless! Living in my room! In constant pain unless laying down. Don’t tolerate mentioned meds. Where do I go from here. At the end of my rope!!!
Thank you!! Can you respond by e-mail???
[email protected] PatJ
Hello Patricia,
Have you ever received an evaluation from a pelvic physical therapist? Pelvic PT may be able to help, however it depends on the specific details of your surgery, and overall medical history. Where are you located? I may be able to recommend a therapist in your area.
All my best,
Malinda
Is there anyone in Buffalo, NY that treats this condition.
Hello Stephanie,
I’ve been dealing with pelvic floor dysfunction since November of 2010. I’ve seen numerous doctors (primary care,
urologist, proctologist, osteopath, and nuerologist)with varying diagnosis’s given. I truely believe I have PN.
Please help me locate a physical therapist in washington state, seattle area. Thank you very much, Toby
Hello Toby,
Here are the names of pelvic floor therapists in your area.
Tina Allen, PT
University of Washington-Roosevelt
Seattle WA
(206) 598-2889
Sagira Vora, PT
Overlake Hospital Medical Center
Bellevue, WA
(425)688-5900
All my best,
Stephanie
By the way, are there any PT in the South Florida region?
thanks,
moe
Hello Moe,
Yes Pamela Downey, PT is located in Miami Florida. Her contact information is below.
Pamela Downey PT, DPT, WCS, BCB-PMB, PRPC
(305) 666-3232
Best,
Malinda
I found this site while I was looking for an explanation of why I get a shooting pain in the arch of my right foot upon initial vaginal penetration. It quickly goes away in less than a minute. The pain appeared about two or years ago and since it rapidly goes away I have not worried about it. I am however, curious. What would make a pain shoot through the arch of my right foot upon initial vaginal penetration? I appreciate any information you can share, thank you.
Hello Kathleen,
Without evaluating you, it’s difficult to say why you experience shooting pain in your right foot. My guess is that this may be positional related, or there may be a superficial trigger point present in your pelvic muscles that is affected during initial penetration.
Best,
Rachel
Would you please recommend a therapist in the Pittsburgh, PA area?
Thanks!
Hi Michele,
Sure thing, here are the names of two therapists in Pittsburgh, PA.
Christine Woods, PT
Pittsburgh, PA
(412) 967-9229
Fox Chapel Physical Therapy
Janice Bryant, PT
Pittsburgh, PA
(412) 422-4775
UPMC Centers for Rehab Service
Best,
Allison
Admiring the time and effort you put into your website and detailed information you offer.
It’s good to come across a blog every once in a while that isn’t the same unwanted rehashed information.
Fantastic read! I’ve saved your site and I’m adding your RSS feeds to
my Google account.
Hello,
For 8 weeks now I have been truly suffering. I am experiencing a severe burning pain in my pelvic region accompanied by urinary hesitancy, frequency and urgency. I have pain after orgasm. The pain is extreme when sitting and this seems to be what aggravates the problem. If I stand I am fine. If I lay down I am fine. In addition to these symptoms I have been experiencing light muscle spasm in the left legs and pelvic area. I have a ruptured disc in l4 l5 s1 and I believe this is linked. I cannot find a doctor that knows anything about PN or PFD. Neurologist says he doesn’t know much about PN and my urologist ruled out prostatitis. I have seen 8 doctors and I have been unable to work because of the pain and lack of help. I truly am desperate and scared. I am 29 years old and can’t afford to not work much longer than 4 more weeks. Would you happen to know of a doctor that knows about PN and spinal issues in Oklahoma ? I could also fly to Michigan also as my family lives there.
Any help is truly appreciated. Thank you,
-Steve
Hello Steve,
I am sorry to hear about your situation. We do not have doctor referrals for you, but we recommend that you contact Lisa Herring, PT in Oklahoma City. Lisa is also a pelvic floor physical therapist, and should know more about physician specialists in Oklahoma.
Lisa Herring, PT
Specialized Physical Therapy
(405) 751-9955
[email protected]
All my best,
Rachel
Hi
Thank you so much for this wonderful article! Very informative and extremely useful to understanding this condition. I am a 45 year-old female. Last year I began to have a loss g-spot and clitoral sensation that has continued to diminish over the last year. I have no pain but the loss of sensation has impacted my mental health and sex life. I have never had any pelvic surgeries but I did have 2 vaginal births, the most recent would have been 14 years ago. Last year, I was diagnosed with pudendal neuropathy by having an EMG test. I have been to a pelvic physical therapist. She was helpful but stopped therapy because I did not have any change in sensation. I then started acupuncture but I felt that it contributed to the loss of the little remaining sensation that I had. I recently started structural Integration. I have had some benefits such as looser hips but there has been no change in sensation. He was surprised that I did not have bowel issues along with the sexual issues. I have occasional stress incontinence with very forceful coughing. I have no herniated discs, diabetes or any other diseases. I am a frequent bike rider. I can have a orgasm but it feels very weak to me but not to my husband. I have not taken any pharmaceuticals.
I saw that you don’t consider it pudendal neuralgia if there is no pain. So what I am experiencing may not be pudendal nerve issue??
Could it be nerve irritation and\or muscle hypertonus.
I am not sure what my true impairments are that cause my symptoms.
As I sit here writing you my right buttock has been in a spasm. This happens frequently and I am unsure of what triggers the spasms.
Any insight would be appreciated.
Do you know of any qualified therapists in the Pittsburgh Pa area?
Thank you
How long will my question be awaiting moderation?
Hello Chris,
We apologize, but due to the high volume of questions, there is a delay in our response. Please refer to your original post foran answer to your question.
Best,
Liz
Hi Chris,
There is a difference between pudendal neuralgia and pudendal neuropathy. Pudendal neuralgia is pain in the distribution of the nerve, neuropathy, on the other hand, just means that there is something wrong with the nerve, not necessarily pain. So, you may have pudendal neuropathy. However, given your symptoms, it doesn’t really sound like pudendal neuropathy. If it were, I think you would have more urinary and/or bowel symptoms. Most women who have had a vaginal birth will have a delayed pudendal nerve EMG, even those who are asymptomatic; therefore, that test doesn’t mean much. Are you peri–menopausal or menopasual? I wonder if your change in sensation/intensity of orgasm is due to a decrease in estrogen. I would discuss that with your gyn. It doesn’t really sound like a musculo-skeletal issue. If you want to get another opinion with a PT in the Pittsburgh area, I would recommend these therapists:
Christine Woods, PT
Pittsburgh, PA
(412) 967-9229
Fox Chapel Physical Therapy
Janice Bryant, PT
Pittsburgh, PA
(412) 422-4775
UPMC Centers for Rehab Service
All my best,
Liz
I wonder if you have any information for sufferers of pelvic pain in Sweden. I’ve been treated for symphis pubis dysfunction but it has made my condition worse.
Thanks.
Julie
Hello Julie,
We do not have a referral for a therapist in Sweden, but I can refer you to therapist in Scotland and UK.
Regards,
Stacey
Bill Taylor, PT Edinburgh
Scotland
Taylor Physiotherapy Sports Injury Clinic
[email protected]
Maria Elliot, PT
London UK
http://www.simplywomenshealth.co.uk/
15 months ago, I picked up one end of a heavy coffee table and twisted to the right.
Since that time, I have had horrific tailbone pain, nerve pain shooting down the inside-left side of my buttocks, and, if I stand for any length of time, the pain wraps up under into my pelvic area (also on the left side)
MRI’s and xrays showed nothing, I’ve tried physical therapy, massage, yoga, acupuncture, 4 different types of chiro care, and a multitude of other things that didn’t work. Various types of MDs have ooked at my tests and found nothing out of order or out of place.
This injury has really hampered my mobility and I’ve gained 15 pounds in 15 months. It hurts to sit, it hurts to stand, it hurts to walk…about the only position that’s comfortable is lying on my back (that seems to take the pressure off whatever is happening)and when someone pushes up on my sacrum. Standing is the worst.
I can’t seem to get a straight diagnosis from anyone. No one “sees” anything in the tests.
Any thoughts? Does that pudendal nerve come up as far as the top of the buttocks? Can it cause tailbone issues also?
Hi Mary,
Without evaluating you, it is difficult to say what is causing your pain, but these symptoms can be caused by tight muscles alone. I would recommend that you see a pelvic floor therapist if you have not already done so.
Best,
Malinda
Best,
I have a similar story, lifted some paving slabs in the garden and afterwards I had terrible right side sacroiliac joint pain, soon after the nerve pain shooting down my sacrum, buttock, leg, toes, perineum, penis, anus. been a year now with no improvement. My MRI and CT showed nothing. Pretty sure I have some form of SI joint dysfunction, but my physiotherapist says not. Hows this going for you now?
My pt determined that I have central sensitization. She and I are using the Dave Butler method to treat this.
Do you know of any success stories relating to treatment of nerve hypersensitivity?
Dear Teresa,
Yes, we have have had success with patients who have had central sensitization. All my best, Stephanie
what incredibly useful, up to date, relieving information. thank you so much. i have rls and pgad, bladder pain and some urinary and bowel leakage.
my life has been misery for 30 years….a time when no one knew or understood and i couldn’t even discuss the pgad with a doctor.
i am still suffering but know i am not alone and it is not “in my head”.
it is so good to read your information and receive it as affirmation. thank you
Can you recommend a PN/PNE Doctor is Louisiana or Mississippi? I’ve been suffering with Pelvic Pain for 13 years and I’ve seen an Pelvic Floor PT, however my pain was only minimized a little. I’d like to see a doctor to get a diagnosis and then have someone provide a full treatment plan.
Hi there,
I fell on my tailbone 2 yrs ago and have had pudendal nerve symptoms since exacerbated by sitting. . I went to pelvic floor pt for 2 years on and off , had a left hip labral repair with good success for the left side symptoms but not entirely gone. It was found that I have si joint hyper mobility so have had 4 treatments of prolotherapy . Some improvement in pelvic floor control and stability but still unable to sit more than 15 min. I am at the end of my rope with this and don’t know what to do next. My current dr thinks I should go back to pt and I am tossing around trying an injection but don’t know who to go to or what kind of . I live in denver area. I feel I have some centralization of symptoms so what do you think? Thank you so much for any advice!
Dear Kristen,
I’m so sorry to hear about all that you are going through. It’s impossible for me to give you any specific advice without evaluating you, however. I guess a point I would like to make is that it’s important that you make sure you had the right PT. Not all PTs are created equal. Here is a blog post we wrote about what we consider to be good pelvic floor PT:
https://pelvicpainrehab.com/patient-questions/401/what-is-a-good-pelvic-pain-pt-session-like/
Also, this is a post we did on pudendal nerve symptoms with info on the available injections/therapies:
https://pelvicpainrehab.com/pelvic-pain/726/how-do-i-know-if-i-have-pn-or-pne/
In addition, there are medications that you might try. Below are two PTs that have taken our PT course that are located in Denver along with an MD that we often work with you might be able to provide you with additional guidance. All my best, Stephanie
Neujahr Hollie PT Denver CO (303) 260-5092 [email protected] Nishimota & Neujahr Physical Therapy
Gerig Nel MD Denver CO 3033889321 Denver Urology Clinic
Nishimoto Terri PT Denver CO 7204023801 [email protected] N2 Physical Therapy
I need help with this desperately. I had the Mirena IUD removed Feb 11th and have been in constant intense pain since. I’ve seen several doctors, had ultrasounds xrays hysteroscopy laparoscopy nerve conduction test and lumbar steroid epidural with no relief. I’m in so much constant pain I’m considering a pudendal nerve block. I don’t know what else to do.
Dear Reader,
I’m so sorry to hear about all that you are going through.
I recommend that you read the following blog post which is an interview with the two top pudendal nerve specialists in the country, perhaps it can give you further guidance:
https://pelvicpainrehab.com/pelvic-pain/1893/pne-your-questions-answered/
and
https://pelvicpainrehab.com/pelvic-pain/1901/pne-your-questions-answered-part-ii/
All my best,
Stephanie
Hi,
I’m desperate for help. I had a hernia repair and the surgeon couldn’t find the hernia, so he used a 3″ x 6″ piece of mesh and it happens to be the worst choice on the market. I’ve been suffering from unbearable pain left quadrant pain for 7 months. My stomach slips into muscle spasms all the time and it pulls and deforms my whole left side ab for about 1 minute. It’s very painful and pulls from within. Surgeons are refusing to remove the mesh because of the size, so I’m waiting to see Dr. Raz at Ucla for removal. It’s slowly killing me. I have felt a deeper pain on my left side in pubic area and no one can find out why. Then came the deep pain in my rear about where my butt cheeks end. I thought it was from lack of exercise or muscle stuff, but it has increased in pain in two months and I can barely walk. I can not get up stairs with out almost passing out. Two weeks ago I thought I had a yeast infection because of pin needles feeling in my vagina and it was better a few days later, but then the burning started like a tract infection and it was tested and negative. I went to a Gastro to tell him of my rear pain and to show him the big welts in my butt cheeks. He practically laughed at me, so he was no help. The welts are huge like the size of limes and I want to go to the hospital, but no one will know what to do! I’m so sick of stupid doctors telling me it’s not in their area. One doc said” just because a person has migraines doesn’t mean they have a brain tumor.” I just found this nerve problem you wrote about and it sure sounds like me. I have been telling doctors that the mesh has connected with scar tissue to something and it’s killing me! I just get more pills to take, which without pain pills I would die. I need help please! I am in the Bay Area of California and I’m seeing UCSF pain mngt and I’ve seen dr Gregg at Stanford and he’s an ass! I’m praying dr Raz will remove mesh and could he see the nice problem then too???? Please call me if u can 9259892201. I will go anywhere for real help. No physical therapy! The welts in my rear are very concerning and The burning to urinate is strong. It hurts around my anus the pain when I sit now is terrible! I’m just getting by with meds and being in bed. Please help
Dear Karen,
I’m so sorry about all that you are going through!
I believe the best course of action for you is to call our San Francisco office and schedule a phone consult with a PT there. It might be that PT can help you. The number is: 415 440-7600.
Thank You so much for creating this blog: I am a 56 yr old female diagnosed with PN entrapment/L4/5 entrapment, SI joint; I question this because I want a cure; here are my symptoms: on my left rear area pulsating and feels like when you would get a Novocain shot in your gum and they hit a bone/NERVE; but it never stops. Inflammation set in with burning, prickling and a pulling sensation across the rear into the hips that would sting/burn. I also have Vigina/Uterus area stimulated and pelvic, ovaries, bladder and bowls spasms. UNBARRABLE PAIN! Also the base of my spine felt like a lot of bubble bees stinging me. Later into the groin area; feels like nauhing/aching/twisting like leakage of something in the groin/pelvic area.
After begging for help I was prescribed predisone to fight the inflammation; then after several visits to the ER/doctors I was placed on nuriotin and
Oxbutynin (key to ease some of the pain) I was able to get out of bed and walk; the ball feeling between my legs subsided; My symptoms continue however; in the butt/rear area not as severe but there; and if you press on the lower left side of the pelvic bone/groin the pain is deep/nagging pain. Sensation less oh it’s don’t be fooled it’s their everyday. I am tired? I think why am I tolerating this pain? because I have no choice.? Symptoms are set off easy from: twisting, bending, stairs, sitting and just because. Please any advise?
Thank You so much
Dear Cathy,
I’m so sorry about all that you are going through. The best advice I can give you is to get an evaluation from a qualified pelvic pain PT. Where are you located? Perhaps we can give you the name of a pelvic floor PT in your area.
All my best,
Stephanie
Upstate NY.
Please Note: My symptoms now that the medication has calmed things down as best it can. I notice the nerve pulsation is in the left rear butt area and also seems to trigger the left lower pelvic bone and groin? It almost feels like my upper inner thigh area; located right below the groin is turned more outward instead of when relaxed laying straight?
Thank you again for creating this site. I do not want to settle and live with this forever. I am really interested in a PT specialist. As I read it seems like the injections just put a band aide on the real problem.
I’m not sure if you found a specialty PT-but there is an excellent one in Rochester NY that has helped me with severe pelvic floor issues. Her name is Wendy Featherstone–
http://www.specialtyphystherapy.com
she is AMAZING!
best of luck.
Hi Stephanie:
Last night I attended my Sons wedding. I danced a little but for most of the evening (6 Hrs) I sat on a almost stool like chair with a back. When I went to leave about midnight when I stood up the pain under my left buttock an area defined by my husband as the ischeal tuberosity was so intense. I could barely as I still can barely walk, the left leg just would not cooperate and the pain was and is very intense when sitting and walking.
Could this be a PN issue and could it come from the sitting and constant turning to talk to other guests?
Thanks very much for any input.
Andrea
Dear Andrea,
I’m sorry, but without evaluating you I can’t tell you if your pain is caused by an irritated pudendal nerve. There are many issues that can cause the symptoms you describe. I recommend that you visit a qualified pelvic floor PT for an evaluation.
All my best,
Stephanie
I Have severe pain to the left of my tailbone all the way down back at through my crotch. This pain is ruining my life I cannot sit down for more than a couple of minutes sometimes the pain is so excruciating I almost throw up. I am severely constipated I have tried all types of medicines for constipation from prescription to everything possible nothing works. I stay in pain this is been going on since February 2014. I had a nerve block done by Dr. and ever since then I have been in severe pain. I went to a neurologist and he diagnosed me with pudendal neuropathy. My question to you is I’ve had several nerve burnings injections nerve blocks nothing is working what can I do at this point? what type of doctor do I need to see to have a pudendal decompression surgery?
Dear Christine,
I’m sorry about all that you are going through.
One resource for finding a doctor who treats pelvic floor dysfunction (I would not jump to the conclusion that you have PN or that you need the decompression surgery) you can check out the “find a provider” service on the website of the International Pelvic Pain Society here: http://www.pelvicpain.org/Patients/Find-a-Medical-Provider.aspx
I would also recommend that you see a qualified pelvic floor PT. Where do you live; perhaps we can give you the name of someone in your area.
All my best,
Stephanie
Excellent article Stephanie. I appreciate the information you provided. Can you recommend a pelvic floor PT in the Scottsdale/Phoenix AZ area? Having pelvic pain after a hysterectomy.
Dear Skylar,
Thank you for the kind words! Below is the name of a PT in Phoenix who has taken our course:
Munger Diana PT Phoenix AZ 6022643369 [email protected] Desert Physical Therapy
All the best,
Stephanie
Is pudendal neuralgia means that we going to have this for life?
Dear Niki,
No, definitely not! Many patients have symptoms that clear up as a result of treatment.
Best,
Stephanie
I wish I was one, but I know most people do. Sometimes I wonder why I wasn’t 1 of the majority.
Hi,
I have read article with interest and dismay. I have stabbing vag pain, bladder pain and rectal pain on occasion. What I am mostly troubled with…as an almost constant is something diagnosed as PGAD or RGS (persistent genital arousal disorder or restless genital syndrome). I have had three pelvic surgeries beginning when I was 20…uterine suspension (the doctor said he cut some nerves to help the pain), tubal ligation, vaginal hysterectomy (the doctor said he “tightened my anterior vaginal wall to better support my bladder). I have also had a spinal fusion (4 years ago) and 2 weeks ago a right hemicolectomy…these recent two surgeries have caused “lengthy and painful flares. I am 71 so these surgeries were from the age of 20-40. I have suffered with PGAD ever since and it is increasing. Mainly my symptoms are not pain but constant “awareness” of the perineal area and the feeling of “engorgement”…the release can only be found in multiple orgasms. these are difficult at my age and have become VERY painful. multiple means between 3 and 7. I have had some relief from sitting on ice. Also, I have RLS, possibly related (?) Most doctors have never heard of this, can’t/won’t treat it. Most recently was diagnosed with PNE. I have found FYI that SNRI’s, SSRI’s and Cymbalta have made both RLS and especially PGAD much worse…caused a flare. as has Mirapex for RLS.
sorry, I know this is long but wonder if PN, PNE, PGAD and RLS may be related. I have rapid heart rate and chronic constipation (until the surgery).
thanks for listening if you read this far…it is so lonely and so very uncomfortable and painful. carol
Dear Carol,
I’m so sorry about all that you are going through. As for your question, PN, PNE, and PGAD can be related, however; I do not know if RLS can be related. A good resource on PGAD is Dr. Echenberg. Here is a Q&A he did about the condition: http://instituteforwomeninpain.org/dr.-echenberg-answers-questions-on-pgad as well as an online radio show on how PGAD relates to chronic pelvic pain: http://www.blogtalkradio.com/pelvicmessenger/2014/04/24/dr-robert-echenberg-discusses-pgad-persistent-genital-arousal-disorder.
He is a great resource and I’m sure he would welcome your questions.
All my best,
Stephanie
I have pain in my left testicle like it is being pulled into the abdomen. Pain in left thigh and in left bum cheek near the anus. I noticed this after sitting in a chair after surgery for my wisdom teeth removal for a few days. I have had antibiotics and ultrasounds for my testicle and spermatic cord. No abnormalities. I went to the physio and he released a lot of tension in my left bum cheek this helped the deep burning pain in my leg but that’s all. I do also after the physio have a sore spine in the bum crack… Do you think this could be pn or pne…. Thank you
Hello Andrew,
Pudendal nerve entrapment will cause these muscles to become tight, but that doesn’t mean that you have pudendal nerve entrapment. Pudendal nerve entrapment is characterized as burning, shooting, stabbing pain in one or more of the following areas: penis, testicles, perineum, anus, peri-anus, rectum, and urethra. If you don’t have these symptoms, you definitely don’t have pudendal nerve entrapment. However, if you do have these symptoms, that doesn’t necessarily mean you have pudendal nerve entrapment either. These symptoms can be caused by tight muscles alone. In order to get a more definitive diagnosis, you really need to see a specialist, preferably a physical therapist. She or he can help you figure this all out.
Best,
Liz
Hi Stephanie,
Firstly what a great resource, and I think I can speak on behalf of everyone on here, in commenting on how thoughtful, compassionate and responsive you are to everyone’s comments. So thank I can’t imagine how many people you have indirectly or directly helped to get over their pain.
So my symptoms started a bout two months ago while exploring a new way to run. Focusing on pushing on, and initiating my stride from the bony attacment at the back of thigh that the abductors attach to. From this point I have been experiencing strange sensations of fullness and tension in my anus so much so that it all ways feels like it irritated, this irritation is leading it to be in a constant mode of contraction and tension ..which is bloody uncomfortable, and locking up my pelvic floor, to the point of making a bowel movement impossible, or at least a battle. Sitting is uncomfortable for any period of time, and the only thing that brings relief believe it or not is separating my buttocks at the lowest point right up next to the anus with something. This seems to make the sensation go away and allows my pelvic floor to relax. I am thinking that the new running style might have rubbed the pudenal nerve over the bony area and inflamed it. I thought for a while that the anal tension was being caused by surface irritation but now it seems to be more sensory and nerve related , possibly the anorectal branch. From a historical perspective 10 years of ironman racing, bike riding and running, followed by a job with kots of sitting has left my pelvis and hip region very tight, and suffer from SIJ dysfunction.
Wondering on your thoughts for treatment here in Melbourne Australia !
Many thanks ,
Pete
Hello Peter,
I recommend that you see one of the therapists recommended below.
Alyssa Tait, PT
Brisbane, Australia
(617)32770226
Equilibria Health
[email protected]
Angela James, PT
Bondi, South Wales
Australia
02 9369 4111
AJ Physio
All my best,
Stephanie
hello,thank you for the Blog.
I have issue,pls read my message and if you can reply.
I’m lady, I’m 28 ,I’m married and mother of baby boy ( he is 11 months).
I gave birth on 1st August 2013, my birth was with episiotom(in the right side of the vagina) and forceps also epidurel.
on 6th day after giving birth I woke up in the morning with sensation of burning inside my vagina in the area of the stitches also burning sensation in the entrance of my vagina,the burning was so severe so me amd my husband we rush to the emergency and they though it’s an infection so they gave me antibiotic.
well,the things didn’t go well and on the day of my 6 weeks check up I still sore and my vagina sore,also I feel burning sensation in the minora labia and the entrance of the vagina so the doctor gave me cream anti thrush,she was thinking that I have thrush and this cream made the things more worse, I came back to the doctor again and they gave cream for thrush again.
I spent many months going from doctor to doctor and doing many test and swabs and the results all negative, I don’t have vaginal infection, no urine infection, I have nothing.
and now since 2 months the situation got more worse, now I can’t sit down at all, when I sit down just for 3 minutes the burning sensation will start in the entrance of my vagina also in my urethera and this burning sensation last all the day,it doesn’t stop also I feel stabbing pain in the upper side of my minora labia ( the right hand side minora labia near the clitoris) and this stabbing bother me too much when I walk and I move even when I bend over also when I bend over I feel there is something pulling me from inside my vagina also I feel that my vulva feel discomfort while I’m bending over, I feel pressure on my vulva.
so now sitting down it becomes a real problem for me, I can’t sit down at all , also in the morning when I go to the toilet and I rince with water so the burning sensation will start and doesn’t stop, also now I can’t wear underwear because it rubs and the burnning sensation will become more severe. I can’t wear jeans, I can’t wear tight trouses because they hurt me.
also I can’t have sex with my husband because as soon there is penetration and we finish the intercourse so the burning sensation will start in the entrance of my vagina and will not stop.
I took may medications like Amitriptyline,Tegretol 200mg carabamazepine,Diazepam also vitamines B1 and B6 but nothing helped.
also I noticed 3 months after giving birth that when I sit down, I don’t feel comfortable,this discomfort in the area of the vagina.
-please would you tell me if this has a link to do with pudendal nerve, do you think I have Pudendal nerve entrappment?
Really I’m suffering everyday, it’s very painful to walk because of the sensation of the burning.
some doctors told me it could be Vulvudynia, and other doctor thinks it’s pudendal nerve .
I don’t know if I have Pudendal nerve entrapment or Pudendal nerve strechtes?
Can doctors know if I have pudendal nerve stretches? do I need surgery for this case?
Can doctores know if I have pudendal nerve entrapment? do I need surgery fo this case?
thank you
Hello Jasmine,
It is difficult to diagnose your symptoms without having evaluated your pelvic floor. You pain and burning may be due to hypertonic (tight) muscles, trigger points, nerve irritability. As for the connective tissue, it’s a rare day that connective tissue is not involved in a patient’s pelvic pain. I suggest that you see a local PF therapist in your area. Where are you located? I may be able to recommend a therapist.
Regards,
Stacey
I suffer with all these symptons. Can you help recommend a pt in my area who specializes in pn and pelvic issues. I will try what I can to help. Thank you for such a great article, it was very informative.
Dear Debra,
We would be happy to recommend a PT in your area! Where do you live?
Best,
Stephanie
Hi, I feel so blessed to have found your article. I was diagnosed with PN about (3) months ago. My story is somewhat different. However, I too have gone from doctor to doctor trying to find out what is wrong. I have a job where I sit 90% of the time and am in extreme pain whether sitting or standing for long periods. I am okay walking, laying down on my side, or some workouts. You see, 35 years ago, I either broke my tailbone (coccyx) or stretched a ligament when delivering my first daughter. I had pre- ruptured membranes (dry birth) 3 days before delivering. I was adminstered Pitossin to start contractions. I dilated to 7 centimeters and ripped the rest of the way leaving me with a 3rd degree laceration (tear). The medical staff at the Naval Hospital (my husband was in the Army) were completely incompetent and being only 20, I thought this is how delivering a baby should be. I had 3 more children, each time causing pain in the tailbone. They stitched me for an hour and a half inside and out. I should have had a Cesarean but that’s another story. Supposedly, the baby was too far down in the canal so C-Section was no longer an option. Whatever! I had to have PT for a year and sit on a donut at work. Back in the day, technology was not as great so they told me what they thought it was (broken tailbone or pulled/stretched ligament). I reinjured my tailbone in 2001. During the course of the years, I had cortizone shots which sometimes helped and other times did not. Then, after ACDF Surgery (Anterior Cervical Disc Fusion – two levels fused C5-C7 and bone graph inserted) in my neck to get to my spine (cervical stenosis – constriction of the spinal cord) in 2012, I started having the pain in my tailbone, but this time was different. Not just pain, but burning, difficulty having a bowel movement, pain in the ishiatal tuberosities, perineum, etc. When I mentioned this to both the surgeon and the spine specialist, they told me that the top of the spine has no bearing on what was happening in the lower spine (lumbar, coccyx, pelvic area). Excuse me but I thought the body is all correlated and can compromise the way we sit as to how we feel when we stand. Anyway, I have been through so much and the next course of action is to see specialist at UC San Francisco. I was told by my URO-GYN that I also have pelvic floor dysfunction. She also administered medication into my Pudendal Nerve and have been going to Physical Therapy none of which have helped. I am waiting to hear from my insurance since UCSF Medical Center is not in the Network of providers for my insurance. My understanding is that they may approve if there are no other doctors in the network that can provide these services. I refuse to take medication because I am super sensitive. I am so tired and have always and still am an active person. This is taking a toll on my life. I just want to ensure I got the correct diagnosis and that the right treatment if given. I am not looking for the easy way out, I just need to get relief because it is affecting me physically, mentally, emotionally and spiritually. Please note, I did take an amitripylene (anti-depressant) to help me cope and sleep. Any information you can lend me before I proceed would be such a blessing in my life. I especially am grateful that you are a female medical expert in this field that can understand what I am going through.
Dear Millie,
I’m sorry to hear about your situation. Where are you located? Was your former physical therapist a pelvic floor specialist? Please feel free to contact our San Francisco office so that we may better assist you (415) 440-7600.
Best,
Liz
I just found this article. I have been diagnosed with neuropathy of the pudendal nerve likely due to either childbirth or a fall. I do not have any sensation at all, not even pain. I lost the ability to orgasm because I cannot feel anything. This has forever changed my life and my marriage. Do you know if there are any specialists or treatments for complete loss of sensation?
Hi Anon,
I recommend that you contact either Dr. Michael Hibner located in Phoenix AZ, or Dr. Mark Conway in Merrimack, NH. Their information is located below.
Best,
Rachel
Michael Hibner, MD, PhD
St. Joseph’s Hospital and Medical Center
Phoenix AZ 85013
(602) 406-3000
Mark Conway, MD, FACOG
OB/GYN Associates of Southern NH
Merrimack, NH 03054
Phone: 603-883-3365
Stephanie,
I am crying as I write this. Can’t thank you enough for all of this useful information you’ve written. I am actually coming to see Casie at your L.A. location in mid September. It took me a long time to wait for this appointment to come. I have been suffering with PGAD for 15 months now. I have done everything under the sun to try and make it better. I’ve been all of the country. I just recently went to PA last week to visit with Dr. Echenberg who was very sweet but here I sit back home in LA even worse off than I was before I ever saw him. He did a pudendal nerve block and a couple trigger point injections on a Monday which worked great! I hadn’t felt that great since God knows when, Then that following Wednesday he repeated the same thing since I was flying out Thursday to come home . I guess thinking he would “double the feel good feeling” but it backfired and I now have heightened PGAD and this hot rectal feeling . LIke my entire butt burns and I have this feeling like something wants to come out of my rectum now! I never had this before ever! It hurts to sit! I asked him if this was a flare I’m going through (this is now 6 days ago since the 2nd injection he did) and he said no , flares only last a few hours or so. So am I to assume this is a new problem on top of what I”m already suffering with? NO FAIR! Just simply NO Fair!!! I have a 1 year old and a 5 year old. My daughter was only 2 months old when I got PGAD which was brought on by a doctor doing peri urethral injections to get my pre existing bladder urgency since 2011 under control. God, I’d do anything to just have THAT problem back. I mean, as you can see I have a history of PN here but everything I do to improve one thing just causes a new problem. So, now I’m just scared to do ANYTHING. But Stephanie, I have NO quality of life. My kids miss their mom. I am suicidal and so so full of the guilt that eats at me daily. Do you think I am stuck with this new problem since Echenberg did those injections or do you think it’s permanent? I am freaking out! And quite honestly ..exhausted from making getting better a full time job everyday of my life. Please please help this mama rejoin her family again. The arousal is pure hell from PGAD and now this ass on fire thing . Geez. Ok sorry this is so long. But I’m just so angry.
~Melanie
Is it possible to contract pne as an injury do to a sudden unnatural movement? A year ago while standing on a stairway with my left leg two steps down from my right leg I twisted my body sharply in an effort to stop a vacuum cleaner from falling. IMMEDIATELY i felt a very very sharp pain exactly where the inferior renal nerve is located. For days afterwards I could not do anything that stretched that location. Over time I regained movement (a week or so). But to this day I continue to have a presence of pain (the feeling of a pinched nerve) in that area regardless of sitting, standing, walking or lying down. I have tried to explain to therapists where this pain is radiating from but with little success. What can I tell them so they will understand? And are there exercises that would relieve this? I cannot afford surgery even if it were an option.
Hello Jo,
It is my experience that patients usually develop PNE after a traumatic event such as a car accident, childbirth, or surgical procedure. Although some patients do have an anatomic predisposition that increases their chances of developing PNE, the instances in which this occurs are slim. I would recommend that you seek a second opinion from a pelvic floor therapist before considering a surgical procedure. Where are you located? I may be able to recommend a therapist in your area.
All my best,
Stephanie
I’m located near Raleigh. I’ve had 6 visits to a PT and continue to do stretching exercises but that “pinched nerve” pain lingers in that area. I’ve gotten used to it, it seems, but would certainly be grateful if it would disappear! Thank you for responding to this inquiry!
Hello Stephanie, Great information.
My issue started 18 yrs ago. the birth of my first born. Five epidurals were placed wrong and pain went directly to my pelvis. From then on i have had a loss of sensation and urinary incontinence issues. I was seen in 2004 at a pelvic floor therapy clinic in St. Cloud MN. Therapy was unsuccessful for me at that time. Since then I have had sciatic pain, intestinal problems and have been diagnosed with a meningeal cyst that is sitting on S3-S4. size is 30mm by 30mm. A tether from my spinal cord was seen by Dr. Freugenbaum at the Tarlov Cyst institute in Dallas Texas.
He thinks removing the cyst would help. and is willing to do it.
I do believe I have SI joint issues going on too. But what bothers me most is; is the cyst the underlying cause of it all? Sexual dysfunction, Bladder dysfunction have been here for 18 years. Is it to late for hope to get that back? Is there any help?
Where would you go?
I appreciate your advice.
Right now I am strongly leaning at surgery. Dr. Freugenbaum was the first Doctor on 18 years that has validated any of my symptoms. I think that has been the hardest part of living with pain.
Hello Connie,
I understand that is it extremely difficult living with unvalidated pelvic pain. In cases such as yours there is very rarely one underlying cause of your symptoms, such as the cyst. Pain syndromes are often the result of a combination of impairments, which include muscles, joints, nerves, and the central nervous system. When deciding on treatment, it is important to start with conservative measures that have low risk with high potential benefit, such as pharamceutical agents, physical therapy, and injections. Patients often feel like they are at ‘the end of their rope’, which can make surgery seem appealing. Surgery should only be performed in cases where you are absolutely certain than the impairment in mind (the cyst) is a major contributing factor to your symptoms. I suspect that it is not and suggest discussing a trial of draining the cyst as an attempt to determine how much of your pain is coming from this area. People with long-standing histories of pain need to be very cautious with invasive procedures, these intervention have high potential risk for problems with possibly low therapeutic benefit.
All my best,
Stephanie
Dear Stephanie ,
Thank you for doing this. I had a vaginal hysterectomy in 2010 but my symptoms started only 2 months after the surgery. Do you think it’s most likely PNE ?
Many thanks
Nina
Hello Nina,
It most likely isnt PNE, however without evaluating you I cannot say for sure. I would suggest you receive an evaluation from a pelvic floor physical therapist if you have not already done so.
All my best,
Stephanie
Hello Admin,
My name is Jason. First, I want to say thanks for doing this extensive research on such a misdiagnosed topic. I could write an entire book on my experiences with the “issue” over the last 3 years but I will try to keep my post short. I’m a 32 year old military soldier who suffered 2 herniated discs in my lower back while doing push-ups in 2011. 3 days after I hurt my back I started to experience the following; tingling, burning, excessive sweating, stabbing, and/or shooting pain throughout my penial area and anus. I also experience excruciating pain during bowel movements, urination, and orgasm. My bladder never empties fully. I have virtually no blood flow to these areas, rarely have an erection, and have little control of my bladder, thus causing leaking of urine throughout the day. It is as if my lower body doesn’t exist. Luckily I can still run but I’m soaked by the time I’m done.
I’ve consulted with 20+ “experts” throughout the U.S, and they have provided me with no answers. I’ve been used as a human Guiney pig. They started me off with Motrin, then onto Viagra, which made me go blind for 2 days, then alpha beta blockers that actually shut down my respiratory system. Thank God that the ER was within 10 minutes of my house. I’m also thankful that the military paid for the $400K in medical expenses thus far. The closest form of relief was from a pelvic floor physical therapist in Arizona who performed manual pelvic floor stimulation on me through the anus. This treatment was able to slightly relax my nerves for 5 days max, but I had to endure weekly uncomfortable sessions. All in all, I’ve had 2 suicide attempts, don’t have any friends, and only leave the house for work and counseling sessions.
After reading your article, and the hundreds of posts that followed I’m relive that I’m not alone or crazy. I’m not an alien like the “experts” suggest. It’s a shame that the internet has more answers than the doctors provide. Could you please help me with the following; I hate to be repetitive, but are there any other test that I should get done to help narrow down the source of my problem? Do you have any referrals for PN specialist here in Louisiana? Instead of lifetime pelvic floor therapy sessions, should I try some of the medications that you suggested, nerve block therapy, or nerve compression surgery?
Thanks in advance for your time and consideration. I look forward to receiving your response.
Hello Jason,
I’m sorry to hear that you are experiencing much discomfort. Unfortunately, we do not have therapist recommendations in Louisiana. I would like to offer you a complimentary 15 minute phone consultation. Since I have not evaluated you, I will not be able to recommend specific medications, but I may be able to offer some general insight. Please contact our San Francisco office (415) 440-7600.
All my best,
Liz
Hello Liz,
Thanks for the prompt reply. I’m also able to travel to nearby states, such as Texas. I will contact your office soon to schedule my complimentary consult. Thanks again.
I, too, am so sorry to hear about your situation, Jason. Your story really touched me and my heart goes out to you. The information provided here is encouraging and when I hear others’ stories, I don’t feel so alone. I’ve been diagnosed/have PN/PNE for almost 3 years. It’s a life changer. My story is long, too. I basically can do little sitting, and hurt at times simply standing. I hurt and experience great discomfort laying down. Every organ in my pelvis is greatly affected, My rectal and anal system are also greatly affected. I feel as if I have permanent damage to my bowels. The physical, I believe, has affected my cognitive functioning, as well. Thank God for pain medication and a good support system. Please hang in there, Jason! I hope your consultation is helpful for you. I’m rooting for you. There is a support group on Facebook, too. You don’t have t be alone.
Dawn
Hello Dawn,
I’m also sorry that you have to endure the level of pain that you’re going thru. 3 years is a long time to have PN, but I know that we’re both thankful that the research in this field is steadily growing. As far as the sitting goes, have you had any luck with those therapeutic pillows? I recently tried some new medication on Monday called Neurontin, and that helped my bowels out a lot. However, I can’t take the meds in the evenings because they cause drowsiness and blurred vision, similar to the other drugs of this nature. I’m also sure that my cognitive function is altered also. I feel that I see the world in a different light, than before I got injured. Have you tried any kind of shots for your PN? Thanks for sharing your story.
i have shooting and burning pain,when i sit.
Cant sit for not more than 30 mins.
CAUSE: I sat the whole day on hard surface(wooden chair) for 7 days.
Do i have PN or PNE??
Hello Viraj,
I recommend that you see a local pelvic physical therapist so that he/she may rule out PN, but it is unlikely that sitting on a hard surface for 7 days would cause PN.
Best,
Allison
Thank you for replying Allison.
I have been suffering from this problem since 7 months now. Also i have a SKINNY BUTT and i used to sit on a hard chair for hours together(almost the whole day)for 7 days before the symptoms started.
First i was diagnosed with ishcial bursitis but it’s treatment was ineffective.
All those anti-inflammatory drugs had very little effect.
Then i read your article about PN and showed it to a neurologist.
He said there is a problem in the nerves running in the perineum and prescribed me GABAPENTIN,anti-convulsant and anti-depressants for a duration of 2-3 months
But surprisingly when i take GABAPENTIN 300mg, i am relived from my pain within 50 minutes.
The pain, the burning is reduced temporarily for a couple of hours or so.
Furthermore, the pains travelling to my penis region also reduced after taking this treatment for a week!
P.S i had a MRI(1.5 Tesla),which reveals a mild edema at right acetabulum.
what are your thoughts??
Hello Viraj,
I would suggest that you consider seeing a pelvic floor therapist that can manually address your symptoms. In the long run, medications may temporarily relieve some of your pain, but they are not treating the source of your dysfunction.
Best,
Allison
Hello, I have been experiencing increasing numbness in my perineum and genitalia accompanied by occasional pain . It started out gradually . I sit on the computer for long hours ,does this have anything to do with it ? I am also experiencing constipation off late . At the gym i spent some time on the Swiss ball , after which i noticed my perineum going numb . I also have a lower back disc prolapse at the level of l3-l4,l4-l5 thinking it was disc related i rushed to the neuro surgeon again he ordered an MRI that showed that my Cauda equina was normal and this problem is not disc related. I am confused as to where do i go from here as this pain and numbness is very real .please help me.
Hello Ellie,
Where are you located? I may be able to recommend a pelvic floor therapist near you. Also yes, sitting for long periods of time shortens your muscles and can be a cause of your pain/numbness.
Best,
Stacey
I just had PNE surgery with Dr. Michael Hibner on November 3, 2014
I was in surgery for just a little over three hours when I came out they cut me approximately 6 inches parallel to my to my left butt crack. I had a wound VAC in but took it out on my follow up that Thursday. Then they also have a Novocain pain pump that is keeping everything numb from my left butt cheek on down to the left side of my crotch. My pain started just to the left of my tailbone and went all the way down to my crotch. I had been to many doctors to include pain management doctors with tons of different types of injections to neurologist gynecologist & pudendal nerve physical therapist. finally The neurologist said he thought I had pudendal neuropathy. From there, I started research on my own and came across this blog & I thought I was reading a letter to myself. I was the initiator to everything from doing everything the doctors were telling me to do then done my own research and then made an appointment with Dr Hibner in August. I flew out to Phoenix AZ August 5th 2014 to see
Loretta – PT
Pamela – Physicians Asst
Dr Hibner
Once they all did their evaluation & reviewed all my MRI’s my notes from the physical therapists it was determined I certainly have
Pudendal Neuropathy. So I flew home then Dr Hibner’s office called later that week & my surgery date was for Nov 3rd. I was glad to finally have a date but 3 mo away!!! Very few people cancel because they are in just as much pain as you & generally are from out of state. Dr Hibner is the nicest most knowledgable Dr. His bedside manner is awesome. I would recommend him in the highest regard.
So now I’ve had the surgery
The 1st week
Had surgery on Monday had to go to post-op on that Thursday in dr Hibner’s office. It hurt like h*** when they took all the bandaging off Oh my goodness.. !! But once they finally got it off they took out the tiny wound vac & showed my mom how to change the Novocain ball line. Then we flew home. You do all your follow ups either with your pain mgmt dr or your PCP. NOTE: if you are under contract with your pain mgmt dr make sure you bring all your pain meds with you & either a letter from your pain mgmt dr releasing you to dr Hibner so that dr Hibner can prescribe you pain meds because dr Hibner will not write you anything without that release. My suggestion is go straight to your pain mgmt dr immediately after you get home give them all your records from the surgery PA will give those to you before you leave Phoenix. Now back to me & how I was feeling. I Had a lot of surgery pain, everything is numb but you are still very very sore.
The 2nd week
I’ve been up walking a lot. I think the Novacain ball is doing it’s job but things are starting to really wake up. Yes it still hurts some. But you won’t know if the surgery worked for the 1st two to eight months afterwards. I truly feel in my heart that it has worked. When I came out of surgery he told my mom that the nerve responded to the lowest dose of shock which means the nerve is still very healthy. The longer you wait to have the surgery the more you put that nerve in danger of it not responding
I will keep you posted on my progress
If anyone has any questions please feel free to call me & leave me a msg I will return your call. I’ve been resting a lot. I don’t want to do anything to mess this surgery up. So I’m doin everything they tell me to do.
My name is Christine. (713)305-0827
Christine – all the best to you! Thank you for sharing your story. I hope your goes by quickly for you and that you keep your positive, spunky attitude! Brenda
I will say it’s certainly not walk in the park but God’s got this & my faith tell’s me I’m healed it’s just taken it’s sweet time. Dr Hibner said it will take 2-8 months before we fully know. I will keep you posted.
Do you have pain like this?
Yes, I do and the same diagnosis of pudendal neuropathy along with IC, pelvic floor dysfunction, and Crohns. I’m being treated with physical therapy, Botox to the pelvic floor, muscle relaxants, Lyrica, and life style changes such as not sitting, not lifting more than 10 pounds, etc. I am not in the agony that I was in two years ago or even a year ago, but it’s definitely been a journey. It started for me about 15 years ago and in January I finally found a doctor and a physical therapist that could help. Our insurance will not cover surgery, but I will be eager to hear how you progress. You’re much younger than I, and have many years ahead. I hope and pray that you will continue to experience healing and trust God as you go through this. I’ll be thinking of you and praying too!
one more thing which is worrying me is that when i climb 2 or 3 steps at a time it pains as if i have pulled a muscle.
There is no pain when i press my ishcial tuberosities(both left & right)
looking forward for your reply
sincerely
Hi, I am a 64 year old female. Had complete hysterectomy 25 years ago. Excruciating pain for 24 hours after that surgery, and at least 3 months of awful tailbone pain. Had to sit sideways. As of February of this year(2014), I have been diagnosed with rectocele and of all things PGAD. Like I really need this. I have the arousal symptoms of PGAD between 6 and 10 hours every day. The only relief is to lay on my side for an hour, then it goes away til I get up and stir around again. And when I say the ONLY relief, I mean only relief. I now cannot have an orgasm no matter what my hubby and I try. Very frustrating! My GP says “you’re every mans dream and then said it was psychological. Gee thanks Doc. I did talk him into an MRI to see if I have a Tarlov Cyst and/or maybe my rectocele is causing this arousal. (by the way, I had to look up tons of stuff for months to understand why I, a 64 year old woman would be aroused up to 10 hours a day). I am now fighting with my insurance company to cover an MRI that would show which of these things would be causing the arousal (a cyst on my sacrum or rectocele). Can you shed any light for me please!
would appreciate any info.
thanks
Sandy
Hello Sandy,
An MRI is helpful, but so is an evaluation with a pelvic floor physical therapist. Because PF therapists palpate your muscles internally, he or she is able to identify the cause of your sitting pain, and can determine whether or not you have a rectocele. I would recommend that you that consider seeing a local therapist in your area who can assess you.
Best,
Rachel
Hello my name is Briana and I am a 20 year old female. I’ve been having a problems after orgasm for a few months now. For about 6 months to a year I have been using a sex toy for clitoral stimulation with no problem. Recently, after using the sex toy and reaching climax on my clitoris I would have a burning pain that I would feel the next morning feeling like I had to constantly urinate and it felt like my bladder was on fire. Right now I am experiencing this pain and it really hurts. Could the sex toy have caused Pudendal nerve damage? My symptoms do not really hurt in the morning but as the day goes on it hurts more and more especially at night. I have a constant urge to urinate and burning sensation inside my bladder. If I have Pudendal nerve can it go away on its own? How can I treat this? Should I see a urologist or an OBGYN? Please help. Thank you!
Hello Briana,
It is unlikely that a toy can cause a pelvic floor dysfunction. Other factors such as stress, your lifestyle, physical activity or injury tend to be the culprits. I would strongly recommend that you see a local pelvic floor therapist who can assess your pelvic floor, and connective tissue. He or she will be able to start treatment to help resolve your symptoms. Where are you located? I may be able to recommend a therapist near you.
All my best,
Allison
Hello Allison,
I am located in the suburbs outside of philadelphia. My zip code is 19038. Thank you so much! I hope this pain goes away so I can have my life back.
I am male 80 years old from Scotland.1 year ago I had an Advance male sling fitted having had a total prostatectomy in 2010. I also had a bladder tumour removed in 2008 followed by treatment with tuberculosis vaccine installations.
In the last few months I have been getting plagued by sudden and painful urgency to pee. There is no urinary infections ever found and these flare ups last a few days at a time. During this I am up about 10 times in the night as well as going every 45 – 60 minutes during the day.
When I am sitting in a chair that is the most comfortable time.When I stand up the pain comes back after a very short time. When in bed it is just as bad.After a few days this goes and I can go for 2 to 3 weeks again managing reasonably well.
Recently a Colonoscopy was attempted with very painful results and had to be abandoned.
I feel that I must be having a nerve compressed but I can never pin it down to why it suddenly starts.
I am not getting very far with a possible explanation but it is getting very wearing living with this.
Is it likely that the sling may be contributing to this.
Hello Alan,
I am sorry to hear about your situation. There may be a few causes of your symptoms. The first is that there may be restrictions your pelvic floor muscles that are affecting your bladder function, and are creating the urinary urgency. Secondly, the pain when standing could be caused by a combination of poor body mechanics, and/or trigger points or tightness in your lower extemities. Without evaluating you, I am unable to assess whether your sling is causing any dysfunction. But there is hope! Bill Taylor, PT is located in Scotland, and is a great resource for you. I’ve included his information below. Best of luck!
Regards,
Casie
Bill Taylor, PT
Taylor Physiotherapy Sports Injury Clinic
Edinburgh Scotland
[email protected]
Hello, I have had several falls in the past few years. I also have RSD/CRPS, which is a sympathetic chronic pain disease. My last fall involved crashing down on my tail bone on a cement block that I had been sitting upon. I stood up, got a dizzy spell and then crashed down on my rear. Since then I have had pain on sitting in my coccyx and ischium (pelvic outlet bones). There have been xrays done, of the lumbar area, and sacrum, but no pelvic MRI (neurography). Shortly after the fall, I began to sweat profusely when I had to have a bowel movement. The sweating wets my undergarments, and also the toilet seat. The sweating is just above the butt crack, under both buttock cheeks, and in the saddle area. I am trying to have doctors take this seriously but they are not. I have heard of the MRI pelvic neurography. I think that there must be nerve damage somewhere down there, or I would not be having this weird sweating which only happens when I have the need to have a bowel movement. And occasionally when I get an anxious feeling it will also happen. Can you help me, or direct me to a doctor near Santa Barbara, or San Luis Obispo, or somewhere in California who will treat me? Thanks so much.
Hello Catherine,
We are located in Los Angeles, and would be happy to schedule an evaluation for you. Please contact our office for more information at (424) 293-2305. Dhara Solanki, DPT is located in Santa Barbara, and would also be able to evaluate you. Her information is below.
Dhara Solanki,PT, DPT, MS
Aum Physical Therapy
Santa Barbara CA
(805) 682-7777
Regards,
Stephanie
Hello,
I am a 32 year old female. I recently had a miscarriage in January 2014. But I have had pain since December 2013. I thought the pain was from the miscarriage but after 4 ultra sounds and CTs, my gyno and internist is stumped. my symptoms are:
– numb, pain and tingling in my inner thigh and upper thigh
– sharp, stabbing pain in my lower left abdomen
– tingling sensation in my genital area (one said only)
– lower back pain
Could this be PE? I am pretty much always in pain. If this is PE what kind of Dr would I need to see?
Hello Lee,
As mentioned in the blog, your history is key in helping to determine whether or not you have PN/PNE. Have you received an evaluation and treatment by a Pelvic PT? A therapist will be able to examine your pelvic floor internally and he/she can test the pudendal nerve to determine if that is in fact causing your symptoms. Would you like a therapist referral? If so, where are you located?
All my best,
Stephanie
Hello I have not had an exam by a PT. I live in Atlanta, Ga so if you have a recommendation that would be really helpful!
Hi Lee,
Here are therapist recommendations near Atlanta:
Jenny Hunt, PT
Provenance Rehabilitation of the Greater Atlanta Area
Alphretta GA
678-819-8720
[email protected]
Lone Howell, PT
Physiotherapy Associates Lawrenceville
Auburn GA
(770) 995-5242
Best,
Stephanie
Hello, I started having the usual PN symptoms recently when I was traveling with the family for vacations in a long 8 hour drive about 2 weeks ago, The burning pain started mild around my lower back then traveled from my anus to my penis. I had mild burning pain when sitting during our trip. On our way back home the pain was so bad that I went to the emergency room. The diagnose was uretritis ( urine test came back normal). The weird thing is that when standing up or during night sleep the pain is 0 and I even wake up thinking that everything is fine, but it is not, the pain comes back during late afternoon or early evenings.
I went to the urologist and told him my symtomps and even metioned that I thought I had PN. started taking medicine 4 days ago for prostatitis also Arcoxia, a muscle relaxer and vitamine B complex for the PN. it is a manageable pain when I sit down for 2 -3 hours. After that it gets worse.
I have been woring from home for the past 6 years and I beleive my posture cause this. I also ride a road bike for the past 2 or 3 months, around 40KM 2 or 3 times a week and jog 2-3 time a week. I stopped excercising altoghether.
Now, the tricky part is that I am from Panama (central america) and I dont know anyone who can help me here. Do you have any contacts that you can recommend?. If not, what should I do?
Thank you
Hello Jimmy,
I apologize, but we do not have a therapist recommendation for Panama. I would suggest that you consider traveling for treatment. We offer patients a specialized out of town program if you are interested. Please contact our office for more information. (415) 440-7600.
All my best,
Stephanie
HI Stephanie,
Thanks for your reply.
For now, I have been seeing 2 Drs. One is a pain management Dr ( Anesthesiologyst) and a Physical Medicine and Rehabilitation Dr.
I did an MRI for my lower back and it came back negative. I have been taking Lyrica for the last month ( 75 mg in the morning and 150mg at night) It has helped some but If I sit for more than 1 or 2 hours disconfort starts.
I have also done a electrodiagnostic test that among others, showed a motor latency test of the left pudential nerve at 6.6 Ms and 3.1 Ms for the right pudental nerve. All other test are normal.
I have a Dr. Appointment tomorrow with the Pain management Dr. to study the resuts and see a way of treatment.
What do you recommend?.
THanks a lot for your help
Hello Jimmy,
As I mentioned before, I would encourage you to travel for treatment if you do not have access to a local pelvic physical therapist. Unfortunately I am unable to offer specific advice without evaluating you.
All my best,
Stephanie
Hi Stephanie,
I have been going through some pelvic issues for around almost 2 years now. It started in July of 2013 where I started having some vaginal burning/stinging sensations. From July ’13 through January of ’14 I saw my primary care physician, my obstetrician, my endocrinologist and finally a urologist last. At one point I was treated for a UTI, but off the antibiotics I went and it seemed symptoms would be back. I finally succumbed to the suggestion of having a Cystoscopy done by the Urologist in Feb. of 2014. BAD IDEA. I read up on them, I knew of all these horror stories, and I knew the risks but I was desperate for an answer, so I did it anyway. To this day, I wish I had never gone through with it!! I kick myself every day for it!! Long story- short the Cystoscopy came back totally normal. The burning/stinging continued, but I had all of a sudden (after the Cystoscopy was done), acquired a new symptom. And it is that of a “stabbing-like” feeling right inside my urethra. I told the Urologist about it at my follow up, as this symptom was not present before the procedure. He refused to admit that this new symptom was from the procedure and said he did not know what else he could do for me.
I decided to try a different approach and go see a chiropractor. Over that last year, my stinging/burning has vastly improved to the point where I really don’t notice it much anymore, but the stabbing feeling is still there. And it isn’t a constant thing. It’s like… an on again, off again thing. I can go for like 2 weeks and feel really great, and then all of a sudden, like today, I wake up with it, and it is anxiety, and crying and a mental breakdown that usually accompanies me with it. It is so strange. I often thought about my anxiety and kind of noticed a relationship, that when I got this stabbing sensation, I was also very panicky feeling and anxious. My whole frame of mind changes and just goes to a very depressive/anxious state!! I kept asking myself if there is a correlation, or if I am just anxious because I know I will have to endure this stabbing the next few days. This stabbing, is…like… it’s an “episode” of some kind. I also notice that I get relief if I stand or am laying down. It is really when I sit down on a chair or plop down on a couch that I all of a sudden feel a sudden “jab” down there. I can even bring the sensation on again, just by shimmy-ing side to side or wiggling back and forth in my chair. It’s like there is something down there, that when I move just the right way, is putting pressure on a nerve or something. Does this make any sense? It’s hard to describe.
Anyway… I cried all day today and decided to look up some information and came across your article. Do you think Physical Therapy would benefit whatever is going on? I feel at this point, I am practically convinced that my jabbing is due to something (maybe nerve damage/nerve inflammation) from my Cystoscopy. It just was NOT there, EVER… before I had that damn procedure done. I am so very, very afraid that I will have to endure this, the rest of my life. I am so scared about that… the thought of it, horrifies me! :o(
If you think PT might be helpful, I would appreciate a referral if you know of anyone in my area. I live in the Akron or Cleveland area of Ohio. Or if you have any other suggestions, I would welcome those as well.
Thank you so much for taking the time to read my story.
Hello Dawn,
I’m sorry to hear about your situation. All to often we meet patients with a similar history, but the great news is that help is available! The Cleveland Clinic has a great pelvic pain center, and would be a good place for you to get started with treatment. Here is their information:
Betsy O’Dougherty, PT
Cleveland Clinic
9500 Euclid Avenue,
Cleveland, Ohio 44195
1(800) 801-2273
All my best,
Stephanie
Can anyone tell me if their are any doctors located in New York on Long Island that treat PNE?
Hello Renee,
Yes, here is their information:
Diana Kafka, DPT
Beyond Basics Physical Therapy
New York, NY
(212)3542622
Stacey Futterman, PT
Five Points Physical Therapy
New York, NY
(212)226-2066
Best,
Stephanie
Is it possible to have PN symptoms due to L4-L5 stenosis? If so, is there therapy to address that which doesn’t involve back surgery? My spine Dr said that it is not uncommon in older women (I’m 65). And I have no pain going down either leg which normally would result from this area of stenosis.
Hello Hannay,
Stenosis may mimic PN pain, but it is unlikely to cause PN. I would recommend that you consult with a local PF therapist in order to receive a full assessment.
All my best,
Stephanie
I had mesh removal about 10 weeks ago and everything went well except I began having pain in my low back right. It is an aching pain not shooting pain. I have also had aching in my legs down to my toes along with some rectal pain. Is it possible I have nerve damage and how would I know. I do not have pelvic pain like I used to have and really no other symptoms. I was in a compromising position on the operating table for about 4 hrs and kept thinking I just needed several visits to the chiropractor. I didn’t have the lower back pain until the removal surgery. It was more groin and pelvic pain.
Kim,
In order to understand the cause of your symptoms, an evaluation will be crucial. I recommend that you consult with a local pelvic floor specialist.
Regards,
Stephanie
Hi Stephanie,great article,i now understand a lot more than I did,i am 67 years old,in 1973 I broke my left leg,i was in plaster for three years,result the leg is half an inch shorter,well being young I never bothered with a built up shoe,i had years of bad backs,till a therapist pointed out my problem ,,[about 20 years later]five years ago I started with pins/needles and numbness in my right foot,over time it spread to my left foot,then the burning started up my legs, and my my bottom,made very much worse sitting ,and standing.the first neurologist,just told me to carry a soft piller around ,if no better come back and see him,i complained to my doctor,i then got an MRI,which showed no sciatic compression,the second neuro guy did the electro tests,he referred me to number 3 neuro,had a spinal tap, head scan,i don’t have parkinsons,now I am going into my sixth year and still no diagnosis,i have spent the best part of this time lying on my stomach,as it the only pain relief I get,i am on 300mgx 2 pregabalin,and I am still trying to work at my job ,can I ask you what do you think,
PS I am only 70 miles from bill tailor, thank you colin
Hello Colin,
I see that you dont mention receiving treatment with a pelvic floor therapist. I would encourage you to consult with a local therapist who can evaluate you. Even if neurological tests have resulted inconclusive, a therapist will help you determine if there are muscular and or neurological contributors to your pain, as well as start a collaborative treatment plan with other providers.
All my best,
Stephanie
Very well written!
I have not yet heard a doctor say to me that I have PN or PNE, only one out of about 5 that I have seen say it sounds like pudendal nerve issues. I feel like the doctors I have seen don’t care to find the right diagnosis for my pain because they can’t see it visually. I fit the description for PN. I started having burning/stinging pain in the skin of the vulva, the clitoris, portions of the labia and urethra 2 months after having my son. I pushed for 3 hours then ended up having a c-section. Not 2 weeks after the birth I got a bad urinary tract infection. It took two months to finally get rid of it, being on several antibiotics almost that entire time. Once the infection cleared, the symptoms did not. That is when the doctor visits began. I have seen a urologist, did pelvic floor PT for 8 weeks, seen a chiropractor for hip alignments and just started on gabapentin. I had to beg a doctor to give me the gabapentin. She just wanted to recommend me to yet another doctor because she had no idea what was going on. After tons and tons of internet research I think I found my diagnosis myself, but would still like to find the right doctor to tell me something for a change and help me with this pain. If you could please recommend me to someone in the Austin, Texas area I would very much appreciate it!! Nobody I have seen has ever even heard of PN let alone how to treat it. I just want it to go away.
Hello Jennifer,
I am sorry to hear about your situation. It is unfortunate that providers have been unable to help you. But there is good news! We can recommend a couple of therapists in Austin who can assist you. Their information is below:
Sara Sauder,PT Cody McNeely,PT Angela Dobinsky,PT and Christina McGee,PT
Sullivan Physical Therapy
Austin TX
(512) 335-9300
[email protected]
All my best,
Stephanie
Hi Stephanie, I’m hoping you can recommend a PT and/or obgyn close to the North Attleboro area of Massachusetts. I have a friend who has been suffering from PN issues and pgad and I’m trying to help her find someone.
Hello Rachel,
We highly recommend gyn Mark Conway,MD. In addition, we recently opened our fifth therapy office in Waltham,MA. Please call us for more information if you are interested in scheduling. (781) 577-6648.
Mark Conway, MD
OB/GYN Associates of Southern NH
30 Daniel Webster Highway
Suite 11
Merrimack, NH 03054
Phone: 603-883-3365
Best,
Stephanie
Hi,
I think I have sudden onset PN – all of my symptoms appear to fit. I also have a rectocele, which I believe has recently become somewhat worse. (I had been advised to do kegels by the continence nurse at my local continence clinic here in the UK – for my urge and stress urinary incontinence – and I think they’ve made my prolapse worse.) I’m wondering – is it possible that a rectocele and/or other pelvic organ prolapse could trigger PN?
Such excellent articles by the way – thanks for the blog and the rest of the website; I’m learning so much.
Hello Sue Ann,
I would recommend that you consult with a local pelvic physical therapist who can evaluate you. A prolapse will not usually cause PN, but without an assessment it is difficult to say. Maria Elliot is located in London and would be a good resource for you. Below is her information:
Maria Elliot, PT
http://www.simplywomenshealth.co.uk/
Regards,
Stephanie
Dear stephanie
thank you so much for taking the time to answer all of these peoples questions and hopefully mine. I live in the buffalo area and I am possibly experiencing pn pain..can you recommend pelvic floor specialists who are trained in pudundal nerve pain. Buffalo NY that is.
thank you so much
Hello Russ,
We do not have a therapist recommendation in Buffalo, but if you are able to travel, we can recommend a few therapists in Canada.
Best,
Stephanie
Hello
I had a hysterectomy back about 7 years then just a year ago I had to have a recto cycle repair, now since yesterday I’ve been having pain inside my uterus and around the outer right of my uterus and the pain radiates to my butt cheeks and down my leg a little. I’m not sure what it is. It only started yesterday? Can you help?
Hello Donna,
You will need to receive an evaluation from a pelvic floor therapist in order to understand the causes of your symptoms.
Best,
Liz
Two years ago I had a raging yeast infection after being put on hormones. The pain never went away. A year ago I had months pelvic floor physical therapy. My therapist then refered me to a neurologist in Houston. I then had three pudendal nerve blocks in the next few months. The first two helped me for a few weeks but the third which included Botox made matters worse. The neurologist then wanted me to do radio frequency ablation which I was afraid of. Every time I say the pain is from the yeast infection they don’t think it is. Could it be? Regardless I still suffer with it along with depression. Your life just shuts down. I am seeing a neurosurgeon now who suggested a spinal stimulator, what is your view on that procedure?
Can a yeast infection be the cause of PN? I have been suffering for two years and am miserable. I have bouts of severe depression with this. I have had three PN blocks, two helped for a few weeks and the third with Botox made things worse. I did see a therapist for a while but there are limits to physical therapy on my insurance and could not afford it anymore once I was billed for what it didn’t cover. What are your views on radio frequency ablation or a spinal stimulator? I have read positive things about the stimulator. Your article makes me realize I am not alone. Before this pain I was so active, gym 5:00 am five days a week. I loved my workouts. The more I sweated the better I felt. Now I’m lucky if I go to the gym and walk twice a week. I know that’s part of the depression. This pain robs you of so much. I am lucky I am able to stay home but what kind of life is that? One thing I did find out during this time and doctor madness is I had congested pelvic. The doctor thought that would fix me but nope. He said it was the worse he had ever seen but after the embolization of my left ovarian vein I feel no different. As you can see I’ve been to many doctors. Your view on a spinal stimulator would be appreciated. Thank you.
Hello Beth,
We’ve recently written an article that may help you understand the cycle of pelvic pain and yeast infections.
https://pelvicpainrehab.com/yeast-infection/2780/wheres-the-yeast-when-pelvic-floor-dysfunction-mimics-yeast-infections/
Best,
Allison
In 2013 I fell on a tight rope.The excruciating pain i felt caused me to see stars and sent a feeling of electric shock through my body. It felt like my teeth had been knocked out.My right labia turned black. An x ray showed no fracture. A hematoma formed and I began to feel numbness at the sight. I continued to work which involved a lot of driving.I began to feel as though a clothes pin was clipped to my clitoris.I felt continuous burning and stabbing, which I still feel 2 1/2 years later. I feel a buzzing that reaches my teeth. I stopped working 10 months ago due to pain while sitting. The pain is like a vibration through my body. I am having difficulty concentrating as the pain and sensation is maddening. I feel like I’m going crazy!
Hello TK,
We encourage you to consult with a local therapist, and if appropriate, begin treatment.
Best,
Stephanie
Five weeks ago I had a davinci assisted vaginal hysterectomy for treatment of abnormal uterine bleeding, prolapsed uterus and adenomyosis. I am 36 years old and otherwise healthy. On the fourth day post op I started to feel a burning/ pulling sensation into the right butt area. It felt like a stitch from the vaginal cuff irritating. It started to hurt down my inner thigh. I rested and it improved. At 2 weeks post op I started driving and increasing my activity. The feeling started to come back and this time it seemed to trigger sciatic like symptoms. Saw surgeon at 4 weeks post op and she felt a corner stitch in vaginal cuff may be causing irritation. She said cuff was well healed and so she removed stitch. Pain seemed to be improved but then came back and was worse into hip and upper butt cheek. Dr did pelvic ultrAsound and its normal. I don’t have bladder or bowel issues. I have one area around the sitting bone that aches/ burns. This increases with sitting. Still have weird sensations in private area but I think this could be normal at this point. Surgeon said she thinks nerve irritation from lithotomy position. Gave neurontin and said if no improvement she’s referring to neurologist. I am not used to taking meds and can only take at night. I’m afraid a local neurologist may be a waste of precious time. Is there anyone you recommend in Texas ? I am about 2 hours from Houston. I have basically been limiting my activity and laying down is the best position. Pain starts out tolerable in morning and increases with activity.
Hello Brandy,
I am sorry to hear about your situation. Below are therapist recommendations near you:
McNeely Cody PT Austin TX (512) 335-9300 [email protected] Sullivan Physical Therapy
Sauder Sara PT Austin TX (512) 335-9300 [email protected] Sullivan Physical Therapy
Hathaway Lorien PT Plano TX (972) 579-8100 [email protected] Baylor Plano
Bobb Valerie PT Dallas TX (214) 820-1860 [email protected] Baylor Landry
Fournier Stephanie PT Irving TX (972) 579-8155 [email protected] Baylor Irving
Woerner Marie PT Ft Worth TX (817) 735-2100 [email protected] UNT Health Science Center
Best,
Stephanie
Thanks for wonderful information on PN and PNE. I am trying to self diagnose my three months old pain. Doctors have not given me any answer other than oh ya its nerve pain and take ibuprofen or gabapentain. I have electric shock like pain right at sit bone. It comes 2-3 times a day for a second. Very localized always at same place. It does not radiate. But it comes after couple of hour drive or sitting in office or flight. It also comes when I stand on left leg. This pain is on left side. Have received some releif last week by change in life style and ibuprofen. I am sitting on donut cushion to avoid pressure at sit bone. Also PT seems to help. Does this sound like PN?
Regards,
Manish
Hello Manish,
In order to know for sure, an evaluation is necessary. However, it does appear that pelvic physical therapy can address your symptoms. Is your current therapist a pelvic floor specialist?
Best,
Stephanie
Hi, I am at the end of my tether…in January this year I had a heavy feelin overnight in my vagina followed by a months of stinging vaginally and anally. The months that followed saw me have back and groin pain, hamstring pain, buttock pain which I was told was piriformis muscle. I get stomach.perineum, vulva, anal and pubic pain and or stinging..the most irritating thing is standing in one position and sitting sets all of these symptoms off as does lots of walking. Even going to the toilet hurts both ways. I spend most of my day laying down.I have seen ortho consultant and have minimal problems. Gyne wise they have told me I have mild cystic else and uterine prolapse. I have seen a pain clinic consultant who did a S.I joint and piriformis injections, which made no difference. I have just started to see a PT that deals with primarily with pelvic problems…but so far we have had no no joy with this. She things this is P.N. …like you have said not to put labels on things. But I have thrown everything at it seem physio,Chiron, osteos and I cannot get no relief…I feel there is no light at the end of the tunnel and am now getting quite upset as my life has been tipped upside down.
Hello Kim,
I am sorry to hear about your situation. Where are you located? I may be able to offer you a therapist recommendation.
All my best,
Stephanie
Hi, thanks for replying…I live in Hertfordshire england. Kim
Hi
just wondering if you know if it is common to have a flare up of symptons after a nerveblock with cortisone injection. The anaesthetic has just worn off as I had it done Tuesday but I can feel the old familair urine frequency is underlying and threatening to ‘be present’ once again. I did not have urgency after the block with just local and this is the first dr that has been able to shed some light so I am grateful and all – just wondering if flare up after cortisone is not abnormal. I am really keen to try the botox.
cheers
Lou
Hello Louise,
Are you currently receiving treatment from a pelvic floor therapist? Patients respond to cortisone and other injections differently, but it is not uncommon for patients to want to do more while under the effect of anaesthetic. Perhaps this may have been the case with you? As you can see, it is difficult to know more about your situation since I have not evaluatated you. I would encourage you to consult with a local therapist for more information, and to begin treatment if you have not already done so.
Best,
Stephanie
Hello, this is very informative, thank you! I’m 23 years old and got diagnosed with localized, provoked vulvodynia about 3 months ago. I recently developed pain in my inner thighs, and it’s very painful to sit down because of the pain I have in my perineal area and down my legs. I live in Turkey and it’s impossible to find anyone specialised on this subject, and there’s only one person who’s very expensive. I have no urinary, constipation, orgasm problems. Is it possible that I have PN too? I have never had any surgeries, childbirth, trauma or anything btw. Thanks:)
Hello Sena,
It is difficult to say without first evaluating you, but having PN seems unlikely. If you are interested, I can offer you a complimentary phone consult. Please contact our office for more information (424) 293-2305.
Regards,
Stephanie
Hi Stephanie,
My Uro doctor told me I might have Pudendal nerve issues, however, we cannot find specialists closed to my area. I am in Los Angeles. Would you refer me a doctor who does pain management of Pudendal and a specialist who can confirm Pudendal nerve problem? Thank you so much!!
Hello Joy,
Please contact our office for more information: (424) 293-2305
Regards,
Stephanie
Thank you Stephani, like many others I am greatful for this information. I have been searching for 5 years now.
My pelvic pain had an insidious onset. It got to a point were the pain was so bad that it felt like I had a wagging tail. That pain decreased after a total radical hysterectomy, 4 years ago. Without Neurontion, the pain travels down both thighs to my knees.I had a large ectocele repaired last week, and my pain feels worse.I had therapy 5 years ago, the therapist strumbed durning the seasons, after 8 sessions with no relieve I stopped going.The symptoms are around the rectum. Could it be myofascial release that I need?
Hi Rae-Anne,
The symptoms you describe will usually respond to a multimodal therapy program that includes manual therapy, such a myofascial release. We recommend getting a second opinion if you did not respond to therapy. However, it is also possible that the therapy may take more than 8 visits or you may need additional treatments such as injections or medications in addition to physical therapy.
Thank you very much for your article. It was God sent when I was wondering what is happening to me and asking God to help me. Since a month I have been getting pain in my head on the left side, blocked left ear when I wake up.
Then started moments of tingling feeling on my left toes and pulsation or muscle spasm in the private area. From time to time Vagina/uterus area gets stimulated. Heavy on the urethra. Vibration in the lower abdomin – Bladder and intestines. More during evenings and night time. Some days very severe vibration in vagina area and all over the bladder and left abdomin when I wake up in the morning. After urination and clearing the bowel I feel better. When I get headache I feel nausea. The vibration or muscle spasm in the vagina and lower abdominal gets me depressed.
Does this sound like PN or PNE. Why is head ache and nausea associated with it. Do you know any female qualified Pelvic Floor Specialists in Sydney, Australia? Thank you again. God bless.
Hi Chris,
It sounds like you may have pelvic floor dysfunction and neuralgia. Angela James is a highly qualified physical therapist in Australia.
Hi,
Can I ask you if a Pelvic Floor Therapist is able to press on the pudendal nerve through the rectum please? Is it so easy to find?
Thanks,
Claire
Author Stephanie Prendergast says:
It is possible to palpate the PN rectally.
I have penile pain it can be unbearable at times its in the glans area also at the tip and untouchable if the foreskin is pulled back I get a wave of kind of pins needles sex is almost impossible where before 45 mins of penetration was normal now it’s mins or seconds as the Penis is so sensitive at the beginning of sex it’s like having the feeling or orgasam before you even start could these systems be PN thanks
Hello Markshalliker,
I am sorry to hear about your situation. It is difficult to say without an evaluation, but it does seem like pelvic physical therapy would be a great resource for you. Where are you located? I may be able to offer you a local therapist recommendation.
All my best,
Admin
Thank you, Stephanie, for the depth of information. With respect to the Botox mentioned in your article, would this injection be into the pelvic floor in general or directed to the obturator internus itself? My PFT has been a blessing but I have yet to find a doctor here who is sufficiently experienced with PN to steer my ship through this journey. I live in San Antonio, Texas, but would be willing to travel anywhere in the state for a consultation with a knowledgeable physician.
Author Stephanie Prendergast says:
Hi Shirley,
Botox can be injected into any muscle in the body, including the pelvic floor muscles and Obturator Internus.
Best,
Stephanie
My girlfriend has been suffering from this condition for 5 years now. I live in Massachusetts and she lives in Rode Island. She has been to many doctors and has been prescribed may medications, nothing seems to help and most doctors think it is all in her head. The doctors don’t even seem to listen to her. I would like to know if there are any doctors in your network in this area, that we can contact and get her some help she so desperately needs? any and all help would be greatly appreciated. Thank you, Scott
Hi Scott,
Please use the below link to find a pelvic floor specialist.
http://pelvicguru.com/2016/02/13/find-a-pelvic-health-professional/
Regards,
Admin
HI STEPHANIE: MY GOD IF ONLU I COULD SEE YOU… 12 OPERATIONS / PROCEDURES IN 4 YEARS. I HAVE LOST MY CAREER AS A PIANIST, MY WIFE, MY HOME AND MY LIFE SAVINGS TO THIS “THING”. MISDIAGNOSED SOMANY TIMES ICAN’T COUNT. PT THAT MAKES IT WORSE MOST OF THE TIME EVEN WITH DIFFERENT PT. THE RECTAL PAIN ON THE RIGHT SIDE IS SO UNBEARABLE AND THEN EVERY SO OFTEN RAISES UP INTO THE RIGHT BUTT CRACK WITH STABBING INTENSE PAIN… THE FARES ARE SO BAD THA EVEN THE LYRICA, MUSCLE RELAXER AND PERCOSET ALL AT ONCE CAN’T STOP IT. I FINALLY FOUND A FEW PEOPLE WHO REALLY KNOW ABOUT THIS AND CAN HELP ME BUT SINCE I LOST EVERYTHING I AM ON MEDICAID WHICH COVERS NO ONE WHO IS AN EXPERT…. SO I PLEAD WITH THEM TO MAKE A DEAL WITH SOMEONE FOR ME AND CONTINUE TO SUFFER…I’M SUR EYOU KNOW OF TRACY SHER IN FL. SHE HAS BEEN WONDERFUL TRYING TO HELP ME WITH REFERRALS, ADVICE, ETC BUT I REALLY FEEL I NEED THE PUDENDAL NERVE BLOCK DESPERATELY…THEY EVEN REMOVED MY TAILBONE…WHAT A NIGHTMARE…INFECTION OF COURSE AND CAUSED MORE PELVIC FLOOR ISSUES…STEPH…THE ANXIETY AND DEPRESSION WHNE EACH FLARE COMES ON IS ALSO UNBEARABLE….WHAT DO I DO… WHAT DO I DO????….STEPH ,,THANK YOU FOR DOING WHAT YOU DO,,YOU ARE A RAY OF LIGHT FOR ALL OF US THAT ARE SUFFEREING… ALL THE BEST AL
I just recently discovered this PN condition, in trying to find answers to my problems. Five months ago I had back to back UTI’s, one month apart. Then three months ago I thought I had another one due to urination frequency and slight burning, but my urinalyses came back clear. They put me on antibiotics anyway as a precaution and sent me on my way. One month later, same thing happened again. More antibiotics. The problem didn’t go away. So I started panicking and thinking I had ovarian or bladder cancer (my mind always jumps to the worst case scenario) and went back to the doctor to tell him of my concerns. I had an ultrasound done to check my bladder, kidneys, ovaries, and uterus, and everything came back fine except we discovered I had some uterine fibroids. My doctor posited that a fibroid was pressing against my bladder, and referred me to a gyno. The gynno looked at the report, didn’t think the fibroid large enough to be causing the urination frequency, and dismissed all my other concerns. Since having the ultrasound though, I’ve had some new symptoms crop up: a sporadic, pulsing pain in the urethra opening/clitoral area that is hard to pinpoint, a sporadic pins-and-needles tingling in the entire vulva region, and a sporadic pain in my right lower abdomen that is hard to pinpoint. I thought I should be referred to a urologist to rule out deeper problems with the urethra and bladder, but last night was actually able to pinpoint the pulsing/throbbing pain as coming from the clitoris (only after achieving orgasm, touching the clitoris at other times doesn’t cause pain).
All that background to ask: is it possible a uterine fibroid (a known factor) could be pressing against the pudendal nerve? I do have another appointment with my doctor next week to see what step to take next in getting to the root of everything, and would like to come armed with some info/questions if PN could be a possibility. Thanks for shedding light on this, my symptoms are mild compared to others’ stories I’ve read, but it’s still baffling.
Author Stephanie Prendergast says:
“It’s not likely the pain is coming from a fibroid pressing on your pudendal nerve. Your symptoms are more consistent with pelvic floor dysfunction and pudendal nerve sensitivity. Your symptoms warrant an evaluation from a pelvic floor physical therapist with experience with pelvic pain, specifically.”
Hi there, this weekend is nice for me, since this moment i am reading this fantastic
informative piece of writing here at my home.
Hi, I had vulvar vestibulitis overnight and after a while my I developed pain right in my inner labia, only left one. After 1,5 years it became worse than ever and I cannot stop thinking that this is not a coincidence, right? I mean VVS should have triggered pudendal neuralgia? Because I didn’t have any traumas excecept a baby kicked my vagina aaccidentally 6 months before I developed this condition. But even that time it didn’t hurt much. Oh and my boyfriend pressed his penis a little too hard during foreplay. I’m so desperate, thanks for answering everyone’s questions.
Hello Sena,
We recommend that you consult with a pelvic floor physical therapist. Please use the link below to find a physical therapist in your area.
https://pelvicguru.com/2016/02/13/find-a-pelvic-health-professional/
Regards,
Admin
Hi, I have had pain deep inside my vagina right hand side only since 2003 after a Lletz procedure. I have all the classic nerve pain but it’s localised to that one area. I have pain 24/7. Standing, laying down but it doesn’t worsen when sitting.
I travelled to Nantes twice and saw Proff Robert. I had the guided blocks bit no relieve. I’ve had years of meds but nothing lasts or seems worth while. I’m been treated for PN BUT because it doesn’t worsen on sitting n I still have it laying down n it’s localised to the right side deep in my vagina I’m begging get to wonder. Any help would be greatly welcom
Hello Pearl,
We recommend consulting with a pelvic floor physical therapsit, please use the link below to find a a pelvic floor specialist in your area.
https://pelvicguru.com/2016/02/13/find-a-pelvic-health-professional/
Regards,
Admin
Fantastic information. I have been suffering for two years now and have been misdiagnosed! Everything you have wrote about on here is me actually. Please can you tell me how I can find a pelvic floor physical therapist in Manchester Uk.
Thank you
Hi Pamela,
Please use the below link to find a pelvic floor physical therapist in your area.
https://pelvicguru.com/2016/02/13/find-a-pelvic-health-professional/
Regards,
Admin
I have PN (diagnosed by a pelvic pain specialist) due to pelvic tension. I read questions on this page relating to blood flow and I was hoping you could help me as well. Periodically, and also on the very rare occasion that I orgasm, I have clitoris pain and the clitoris and vaginal tissue turns dark purple. These symptoms can last for hours, and days. A pelvic floor physical therapist offered an explanation, but I didn’t feel comfortable asking for clarification as I was not overly confident in their understanding of PN.According to the physical therapist I experience vasocongestion, where there is increased blood flow in the area because of the arousal. However, after arousal my muscles remain tense, so the blood vessels constrict and the extra blood stays in my genital area causing pain and the tissue to darken. Is that a correct description? I really want to understand what is happening so I can take the best approach to resolving it. Also, I was wondering if this can lead to Persistent Genital Arousal Disorder. I’ve read about it and I would rather never have sex or arousal again than risk this condition. I cannot thank you enough for your time and for sharing your knowlege and for your compassion.
Author Stephanie Prendergast says:
“Hi Shannon, the description your physical therapist gave you is plausible. PN can be associated with PGAD, though the mechanism is not quite understood. Intercourse/orgasm is not necessarily a causal factor for PGAD.”
Hi,
I am suffering with following symptoms for more than a year.I have approached many doctors from gynecologist,neurologist,urologist.Everyone told i am fine and noone was able to figure out.
Symptoms:Burning sensation in left feet and left palm,Burning sensation and pain in left clitorus and left inner thigh muscles.Pain in left clitorus gets worse before,during and after periods.
I am single,unmarried women.I am afraid more to marry because of this.Are there any chances that i am infertile?But my periods are regular.
What all these symptoms mean?I am feeling more depressed because of this.I couldnt understand myself.At one time i am perfectly fine,sometimes i feel more depressed particularly when i have the pain.I feel like shouting and crying and feeling helpless.
Please help me on this.
Hello Sweety,
We recommend seeing from a pelvic floor physical therapist. You can find one using the following link.
https://pelvicguru.com/2016/02/13/find-a-pelvic-health-professional/
Regards,
Admin
Any thoughts on Femoral Acetabular Impingement and Labral Tears referring pain to groin , perineum, genitals and sacrum?
Both diagnoses can refer pain into the groin, perineum, genitals, and scrotum.
Stefanie, Hi! saw you about 8 years ago with Dr Weiss. Issues are back! Wondering who to see close to the Santa Rosa area. Don’t really want to see Dr Weiss again! Thanks Ron
Hi Ron,
The closest Pelvic Health and Rehabilitation Center to you would be Berkeley or San Francisco. If that it too far you can also use the below link to find a pelvic floor specialist.
https://pelvicguru.com/2016/02/13/find-a-pelvic-health-professional/
Regards,
Admin
Hello, can MRN determine whether it’s PN or PNE? I had an MRN and doctors keep telling me that I have entrapment. Thank you!
Author Stephanie Prendergast says:
Hi Ogzen,
Unfortunately there are no diagnostic tests that can confirm a diagnosis of pudendal nerve entrapment. There have not been studies to evaluate the MRN specifically, our surgical colleagues have not found a correlation between their surgical findings and the MRN results.
Hi I’ve had severe difficulty sitting for the past 2 & a half years – although I’ve had pain since October 2012 (when I was 19). I had my right lateral cutaneous nerve removed in July 2012 as I had meralgia paresthetica for two years and by the October I noticed that sitting was incredibly painful and I started having bladder problems. My sitting problem is so painful and uncomfortable and when it started, I noticed it was affecting my bladder frequency, urgency & nocturia as when I sit it feels as though there’s pressure in my bladder increasing my need to urinate. I also have pelvic pain and problems with my bowels. I’ve stood continously everyday since December 2013 as sitting is just so painful. I’m 23 now with no real quality of life but having real trouble getting doctors in England to believe me/investigate my problems. I’ve recently (last Friday) had sacral nerve stimulation to help my bladder symptoms but my doctor was hesitant about doing the surgery because I’m a “thin” patient – when I also asked again if we could investigate my sitting problems/look at medication so that I can be in less pain and try and sit comfortably (my life has been on hold for the last few years) he said that he doesn’t want to investigate it and that basically it’s all in my head which I know it isn’t! Do you have any advice? Could there be a connection between the nerve surgery I had in July 2012 and my problems that started a couple of months later? Thanks.
Oh forgot to mention that I also have joint hypermobility syndrome too if that’s of any significance? I’ve read that it can cause nerve compression.
Author Stephanie Prendergast says:
Hi Em,
We are sorry to hear of you. It is possible that the impairments that caused the meralgia parasthetica are contributing to current pain symptoms. The symptoms that you describe are consistent with pelvic floor dysfunction and PN, which are also associated with hypermobility issues. A multidisciplinary approach that includes medications and physical therapy is the most effective place to start. I suggest consulting with a pelvic floor physical therapist and perhaps they can refer you to physicians that are better able to help your type of pain.
Great article, thank you! My daughter is 19 and was given a buttock injection and the doctor hit nerves twice. I believe th Pudendal nerve was injured. Is surgery a viable option for her?
Author Stephanie Prendergast says:
Hi Mary,
It is not plausible that an injection caused an impairment that would require surgery. I understand that the injection may have caused pain but that does not mean entrapment necessarily. I suggest starting with conservative strategies including pelvic floor physical therapy.
Hi, my name is Jen.. This article was very useful in terms of understanding the pain we undergo.
It all stated two years back. I had been doing cycling at home and the seat was pretty hard each time I sat on it and I used to sit on it wit great force each time. After two months I stopped with cycling and developed a severe tailbone pain two weeks after which there was urinary burning sensation. Initially I thought it was some infection and took over the counter meds for burning sensation. Later we took a tailbone x Ray to find if there was any minor fracture but the results came out negative. Seen several doctors since then and took various medications for IC, over active bladder and I also developed a urinary retention. Several tests were performed but there was nothing that doctors could find. I later went to a pelvi floor PT and did it for quite some time. Symptoms still remained the same with the tingling sensation in my vulva region reduced and the stabbing pain after urination and bowel movement reduced. It’s been two years now and the symptoms have gone from bad to worst with the tingling sensation in my vulva, not being able to empty my bladder, severe tailbone pain when sitting and lying on my back. Shocks in my buttocks and tingling sensation in my left leg and foot. Anxiety,Piercing pain after bowel movement. It’s been a difficult two years and would be really helpful if you could help. Do you think this could be PN or PNE? Or is the the pain due to the coccyx? I live in NJ close to New York. Thanks in advance
Jen
Author Stephanie Prendergast says:
Hi Jen,
I am sorry to hear that you are having this much trouble. I suggest seeking a second opinion with another pelvic floor physical therapist as well as Dr. Mark Conway in New Hampshire. Multiple factors could be contributing, your first physical therapist should have been able to give you insight as to why things were getting worse in stead of better.
Hi!
Is it possible for PN to cause loss in ability to become araoused? And loose sensation in the vagina? Is there anyway to make this better?
Author Stephanie Prendergast says:
“Factors that cause PN may also cause decreased sensation, including arousal. If you have other symptoms of PN this is possible. There can also be hormonal and other systemic factors that can play a role. PN does not typically cause a loose sensation in the vagina. It will be beneficial to see a pelvic floor physical therapist for an evaluation so they can shed more light on the situation.”
Hi,
I may have PN (according to my doctor, nothing is sure yet but it is likely) and I wanted to know if it is possible to keep a normal sex life ? I don’t feel pain during sex, sometimes a little burning sensation at first but that’s all. Is it going to get worse with time ? It makes me really nervous.
Author Stephanie Prendergast says:
Recovery is absolutely possible with the correct treatment. Burning sensations can also be caused by infection or hormonal changes from the birth control pill, breast feeding, and menopause, in addition to PN and pelvic floor dysfunction. It is important to differentially diagnose the source of your symptoms.
This is an excellent article, the best I have ever read and I have done so much research. I have had for about 7 years now and am always looking for answers. How do I subscribe? I don’t see it anywhere….Thanks so much for all your work and info…
Hi Carolyn,
Thank you for the kind words. You can subscribe by going to https://pelvicpainrehab.com/blog/ on the top right you will see the subscribe box and can enter your email.
Thank you,
Admin
Hello, I’ve been reading a lot about PN and PNE, and you’ve been very helpful. Thank you so much. My question is, I have never had any trauma, no heavy exercising, no cycling etc. I don’t have any problems with orgasm, urinating or no constipation. But I can’t sit. It’s just so painful. And it’s been like this for the last 2 years, I’m 23 and I don’t know why this happened. I had an MRN done, and it’s written that the left pudendal nerve and inner rectal nerve seems thicker and assymetrical. My doctor is sure I have entrapment. Nobody knows the difference between PN and PNE in my country. Back to my question, I’ve read somewhere that if it truly is entrapment then no matter what your position is (other than standing up) the pain won’t change. When I’m sitting on toilet, I press the nerve and it still hurts like hell. When I’m doing pelvic exercise and feel very relaxed, the minute I press on it I feel like I’ll die. Is this a symptom of entrapment? There’s no PFT here so I’m unable to go and try that.
Author Stephanie Prendergast says:
“Unfortunately there is not clinical tests to diagnose entrapment. Pushing on sore impaired muscles and tissues can also cause severe pain, pain on palpation is not a necessarily a sign of entrapment. It sounds like you may need to travel to fins someone who can help you but you should also establish care with pain management physician in your area who can help you manage the symptoms while you figure out how to treat the problem.”
Thank you for the article. It is very informative. I have had pelvic floor pain (hypertonicity) s/p a hysterectomy March of 2014. I have had RFA’s of both the ilioinguinal and pudendal nerves, nerve blocks, botox injections, physical therapy, acupuncture…. you name it. I had 10 months of relief after receiving my first botox injection and after my last RFA of the right ilioinguinal nerve, and moving to a clinic setting. I thought the botox was most effective. After returning to the floor and working in the ER, I started back having the pain. It seemed to have come back with a vengeance. Since January I have been going to PFT, I have received botox injections twice, and have used different modalities at home. This includes medication. I didn’t respond well to the botox in January, most of my pain is on the right side, and for the past 2 months it has included my right hip, and glut. It’s difficult to sit, sometimes it feels like there are hot spots on my buttocks. Most of my spasms are my levator muscles, and my obturator internus. I can feel it track literally from my pelvic floor to my glut. Even down my sciatic. I am scheduled for right ilioinguinal pRFA in August. Does this seem like a reasonable treatment option, or do you think I should explore another treatment option?
Author Stephanie Prendergast says:
We do not recommend those types of procedure unless you are sure that region is a problem. Your physical therapist and physician team should help you with a differential diagnosis to figure out why you are not responding to certain treatments, what specific impairments are causing your symptoms, and a treatment plan to tackle them.
I’m glad I found your site, recently I developed tingling in my butt, genitial area and feet. It does not go away and worse when any type of pressure is applied. I went to my doctor and tried to explain, all he did was take some blood and X-rays. Results were normal. I do have endometriosis but I haven’t had any surgeries since approx. 2007ish. I haven’t hurt my back recently either. I do have a history of constipation and hemmoroids, could this cause a problem?
Author Stephanie Prendergast says:
Constipation can be a sign of pelvic floor dysfunction which is associated with the symptoms you describe, hemmrrhoids, and endometriosis. Blood tests and X-rays will not be able to identify pelvic floor issues, we suggest you see a pelvic floor physical therapist for an evaluation.
I suggested to my doc about this dysfunction, but proceeded with MRI on my back. They did find inflammation in my lower spine so want to do another MRI on head and neck…to rule out other possible causes. Hopefully they’ll figure it out soon, I’m worried about permanent damage.
Stephanie,
I thought this was an excellent articles and sounds like I may suffer from this. Have seen many Dr and they can never find anything wrong with me, always blame my Prostate. But all test of Prostate come back as grossly normal. Could you recommend a Dr. or therapist who can help me diagnose and or treat me in the New York area? I live in Suffolk County. Long Island NY. Thanks for your time.
Hi Ralph,
Thanks for your comment. Please use the link below to find a pelvic floor specialist.
https://pelvicguru.com/2016/02/13/find-a-pelvic-health-professional/
Regards,
Admin
Thank you!!!
I have hip dysplasia and had a slow onset of a numbness in my right leg – starting in the glutes (at a point about half way along the butt bone) – aching pain travels through the groin and radiates down inner thigh. Is it possible the dysplasia is the cause even though I had no previous symptoms?
Author Stephanie Prendergast says:
Hip dysplasia does not directly cause leg numbness but it can refer pain/achiness into the areas that you mentioned. Hip dysplasia can be associated with pelvic girdle muscle and tissue dysfunction that can cause neural irritation and numbness.
I would like to know who is the dr PT, gynecologist ,etc can do the diagnosis of pelvic pain Pelvic Congestion
Vulvodynia
Pudendal Neuralgia
Pelvic Floor Myalgia etc,
Thank you
Hi Carolina,
A pelvic floor physical therapist can diagnosis these. You can find one using the link below.
https://pelvicguru.com/2016/02/13/find-a-pelvic-health-professional/
Regards,
Admin
Hi Stephanie,
I’ve been dealing with tailbone pain since April. I started out at my gyno’s office who then referred me to a PT for pelvic floor problems. The PT has had me in her office once a week for the last few months and I’ve had no relief. I went back to the gyn and he checked me again and didn’t think it was my pelvic floor. I have no pain anywhere unless I sit down or lay on my back. Sometimes I feel pain in my right hip area but I don’t know what to do now. I’ve had two MRI’s, XRAY, and a sonogram. I’ve been to orthopedic specialist and she couldn’t figure it out. I’ve had 4 cortisone shots, nothing helps. Can you give me any advise. I live in Austin, Tx. I’m 33 year old,
Hi Cam,
We recommend Sara Sauder at Sullivan Physical Therapy (512) 335-9300.
Regards,
Admin
Hi,
Is it possible I might have PN/PNE if I don’t have any actual pain aside from very mild burning/tingling/discomfort around what feels like the urethra and the penis? My biggest problem is feeling an urge to urinate every 30 – 45 minutes after going to the bathroom. It’s like a feeling of pressure on the bladder that I first thought was an indication my bladder was full, but if I wait for several hours it becomes obvious that a full bladder is a different sensation. The feeling of pressure, though, wakes me up on an hourly basis each night. Sitting doesn’t seem to make it worse or introduce any pain; in fact, it’s often a bit easier to forget the sensation if I’m sitting down and focusing on something else.
This all started a month ago when experiencing a sharp but very brief pain while playing tennis. I’m being treated for IC for the past few weeks but am not responding to the medication so far.
Thanks for reading/commenting.
Hi Larry,
We recommend you see a pelvic floor physical therapist. You can find one in your area by using the link below.
https://pelvicguru.com/2016/02/13/find-a-pelvic-health-professional/
Regards,
Admin
Follow up. After my neurologist did MRI, they found I have MS. The flare up on my spine was causing the weird symptoms I was experiencing. They eventually went away, well except the feet.
Help ! Im from sweden and gave birth to my child 3 month a go. Had no problems what so ever the first 4-5 weeks but then I started to think about everything that can happen, prolapses, incontinence and so on. It went so bad I started to get panik everytime it was time to do number 2 and I did aloooooot of keagel exersices. Now I really have problem, I feel its impossible to relax, I totally feel my bowel movements, It is an itchy feeling behind my tailbone and I always have a feeling of need to go. I also feel stimulated (sexually) all the time and sometimes I have problem to start urinating. What to do?? Help me??
Hi Sofia,
Please use the link below to find a pelvic floor physical therapist in your area.
https://pelvicguru.com/2016/02/13/find-a-pelvic-health-professional/
Regards,
Admin
Hi:
I was told over three years ago , after a Colonoscopy that I have IBS. Normally people with IBS don’t have pain everyday, no matter what I eat.
I was recently given Neurography and told that I have PN & PNE. I went back and had several blocks to which I was told they were diagnostic to see what nerves need to be operated on. In fact, I had no pain for the first hour. Can you please tell me if these nerves since they are so close to the colon, etc. cause IBS Symptoms. I have read different articles that this can cause IBS Symptoms. Can you tell me what knowledge you have of this.
Jennie Verrilli
Thank you for any assistance on this matter.
Author Stephanie Prendergast says:
It is possible that PN/PNE causes pelvic floor muscle dysfunction which can lead to constipation and GI distress. The PN is not actually close to the colon anatomically but can cause secondary GI issues based on the mechanism that I just described.
Do you have any names for PTs who specialise in this on Adelaide South Australia?
Hi Lu,
Please use the below link to find a pelvic floor physical therapist in your area.
https://pelvicguru.com/2016/02/13/find-a-pelvic-health-professional/
Regards,
Admin
I had a oophorectomy in April of 2016. About 3 months later, I developed vaginal pain, which I first thought was an infection. All tests showed now infection, so in July, I started my quest to find out what was wrong with me. My primary doctor said it was “vaginal atrophy” and wanted me to try topical estrogen, but I am a breast cancer survivor, and was afraid to go that route. So…………… I ended up finding out about the Mona Lisa laser therapy. I have since had 2 treatments, with limited relief. I was about to have my 3rd treatment, but was so sore, the doctor suggested we wait another week. In between all this, I did see a “Pelvic Specialist”, who diagnosed me with Pudendal Neuralgia. He said I needed to stop most of my exercise classes, and take Amitriptyline. I am afraid of this drug, due to the reported side effects, and stopping exercise is tearing out my heart. Should I try to find a PT who specializes in diagnosing this condition? If so, who do you suggest? I live in Annapolis, Maryland.
Thanks for your help and response,
Fran
Author Stephanie Prendergast says:
Hi Fran,
I pelvic floor physical therapist should be able to help you understand the causes of your symptoms. This link can direct you to someone in your area: https://pelvicguru.com/2016/02/13/find-a-pelvic-health-professional/
Thank you for your informative article. Are there any exercises or stretches you would recommend for pudental neuralgia or pudental nerve entrapment?
Thank you.
Author Stephanie Prendergast says:
Each case is different, we recommend that you find and work with a pelvic floor physical therapist in your area.
Hi, I posted before but maybe it never went thru. I am a 46 year old female and have always been in great health. I have always exercised all my life. I contracted a EBSL E. coli after a routine colonoscopy and removal of a small hemmorhoid. I was very sick and and they treated me with resistant antibiotics. I finally was put on Invanz for 16 days and the bacteria was eradicated. I had several yeast infections throughout that process and was in severe pain. Currently, I am taking Myrbretiq and Uribel because of what the infection did to my bladder. I have a higher than normal frequentcy but it is starting to improve. This all started on October 17, 2016. After that they thought I had a first degree burn going into the entrance of my vagina. I was treated with numerous creams and nothing seemed to work for weeks. My pain became unbearable. Finally, I found a Vulvovaginal specilalist, Chris Hemsworth MD, in Miami, Florida. He sent me to PT and Valium suppositories. I have been working with the PT 2 a week with internal work and I have the Therawand she recommended. I do relaxation and the home exercises 2 a day. I have been told not to do any exercise. We tried a set of 5 kegels and I got my menstruation and I totally regressed. Now I am going back to the specialist this week because I explained that when I sit for many hours at work my pain increases. The pain in the entrance to the vagina has begun to get better. Now I am using the Valium suppositories recatlly and I am not straining as much which is a great thing. He wants to do a pudendal block to see how I respond. I started the PT in December of last year. I have improved but truly have been depressed from all the pain I have endured the last 3 months. All I want is to get my life back and start exercising again and be a happy mother to my children. I forgot to mention that when I did have my period I put on a tampon and it was excruciating. I take a small does of Valium at night and sleep ok but wake up 2 a night. Is there anything else I can do. Exercise is my only escape in my life and I can’t do it at the moment. Lastly, I am taking a 2 week leave from work to see if by not driving and having as much stress I get better. Please anything you can tell me I will be so thankful.
Author Stephanie Prendergast says:
Unfortunately the questions in your email would be better handled by your local medical team. If you are not improving with your current team it makes sense to seek a second opinion.
Hi guys
My symptoms (started 1 month ago)
1.Tingling/strange sensation where penis joins the floor(only on right side)
2.Itching in anus and sometimes on pelvic floor
3.Urge to urinate as well as sometimes urge to poop(mild sensations)
4.No pain, no burning
Causes(probable)
1.My right pelvic floor is tilted and lower than right
2.I was wearing tight underwear for almost a year which i realised now(not soo tight)
3.i am overweight
Can you please tell me if it is pn or pne?
I hope its not so serious and treatable.
Author Stephanie Prendergast says:
If other causes have been ruled out your symptoms are suggestive of pelvic floor dysfunction with symptoms of pudendal neuralgia. It makes sense to find a pelvic floor physical therapist for an evaluation.
Please place me on your e-mail list.
I have had left lower buttock pain for over 1 year continuously when sitting and lately even lying down.
I have had pelvic PT for 9 months. 1 Steroid injections into the area was not successful and neither was BOTOX. It has diminished the quality of my life tremendously.
I have not had pudendal blocks. I live in Miami. Can you suggest an MD for this procedure/
Thanks
Burt
Hi Burt,
I have added you to the email list, please use the link below to find a pelvic floor specialist:
https://pelvicguru.com/2016/02/13/find-a-pelvic-health-professional/
Regards,
Admin
Sigmoid colon resection after 12 years of diverticulitis. All was going well first 4 months. I had forgot what feeling good felt like. Then 6 months post op, I got down and up off a blanket on the ground watching 4th of July fireworks. The following morning my LL abdominal quadrant was in pain much like bouts of diverticulitis. Big difference was I could not bend or sit. My left groin/Iinguinal area hurt so bad I had to keep ice on it for months. At same time I would have a burning coal sensation about 4-6″ north of my anus and slightly to left.
Doctors dumb founded, CT NEGATIVE, in misery for another year until a left hemi-Colectomy. I had got to where I could eat no solid food and remaining diverticuli had enlarged significantly.
I seemed to improve the first several months BUT
1-3 weeks post op, in ER due to severe burning pain in urethra. cant talk now, will call you back again negative. Sent to urologist, non bacterial prostititus! Antibiotics did nothing, surprise!
Still have pain AND flat stools since flare prior to second surgery.
I found PN and your site and think I am more inquisitive than my physicians!
Any help in San Antonio, TX?
Hi Stuart,
Please use the link below to find a pelvic floor physical therapist in your area.
https://pelvicguru.com/2016/02/13/find-a-pelvic-health-professional/
Regards,
Admin
Hello,
I have a 19 year old son, he has been sick over a year an any doctor can’t tell him what is what he has, all of them say he has anxiety,
The result of his blood work shows perfect,
An MRI to his back shows a bulging disc L5 L4 L3 S1,
he also had an MRI to the pelvis wich the doctor says is fine.
We have seen 3 urologys and all of them said he is fine and has anxiety
Today he had and Inter-laminar Epidural to the left at the L3-4
He said feel pain in the penis and his testicles are cold and lack of blood to the penis this is the way my son explains this
I live in Springfield Virginia ,
Any ideas
Hi Carla,
It sounds like he may have a pelvic floor disorder. Unfortunately we cannot make specific recommendations without evaluating you. We would be happy to evaluate you in one of our locations or you can use our website to find a pelvic floor physical therapist in your area that can help.
Hello, I’m writing to you as a last ditch effort as I have no idea what to do. My mother is 63 years old and has had pelvic pain for the last 11-12 years, which has gotten worse to the point that she can hardly eat now because of the pain. She cannot get a diagnosis from any doctors here in Fresno CA for PN or PNE. There are apparently no doctors here that even know what that is, and she’s been to numerous ones over the years: her PCP, urologists, neurologists, urogynecologists, PT, gynecologists, none of them appear to know what PN or PNE even is, or they haven’t heard of it. So she gets pushed from one doctor to another until finally she’s just put into pain management and pain pills, and even those now don’t work for her anymore. She’s been to the hospital numerous times as well. She’s had MRI’s, CT’s, US’s, none show PN or PNE. We’ve recently got an appointment with Dr. Weiss in SF, but the consult fee alone is $600 dollars, because of course none of the PN/PNE specialists that we’ve found online take her insurance. She doesn’t even know if she will be able to go because it’s 4+ hours in the car, and she cannot sit, and can barely lay down with her pain. To make matters worse, she’s fallen on her tailbone 2-3x now over the years and she has pain their now; she’s got severe degenerative disc disease of her spine; she can hardly walk because her legs are so atrophied from being in bed for so many years. The other doctor that deals with this in Santa Monica, Dr. Attaman, wants $575 for the consult and $3000 for the test that he does to determine if she even has PNE. Are their any doctors or testing that you know of that she can be finally diagnosed with PN or PNE done in Fresno or Clovis CA? Please help, thanks.
Author Stephanie Prendergast says:
Unfortunately I do not know of any physicians in that area that treat PN/PNE. It makes the most sense for her to consult with a local pain management physician, they understand pain regardless of the type of pain and can help make her more comfortable.
Hello, my wife has seen Dr. Hibner and at this point she has had 4 nerve blocks and Boxtox administered by Dr Hibner. We travel from Colorado to Phoenix at great pain to my wife and large expense. Presently, the Botox has not helped, the nerve blocks are at best, temporary. Please respond back to us as my wife is still in terrible pain, a feeling of being drugged up, and overall miserable. We seem to be back to where we started and the future looks bleak. I can be reached by cell phone if you provide an email or phone number, we are at wits end. Please help if you can, thank you. DH
Hi Daniel,
Please call one of our office locations for more information.
Regards,
Admin
Please add me to your email list. I am in search of a specialist and possibly physical therapist that assists with pudendal neuralgia in females. Due late diagnosis & severe damage from DIE that invaded my intestines, I have undergone multiple extensive & major surgeries involving several surgeons. Your article is exceptional! I sincerely thank you!
Hello,
Thank you for your comment, I have added you to the email list. Please use the link below to find a pelvic floor physical therapist in your area.
https://pelvicguru.com/2016/02/13/find-a-pelvic-health-professional/
Regards,
Admin
Hello, I’m writing on behalf of my mother who has been suffering from an internal nerve problem in the female area where she says she feels either a burning feeling or throbbing. Many years ago, after having a hysterectomy her doctor found a minute amount of cancer cells in the cervix. So she had chemo and radiation and its believed to this day that she had too much treatments possibly killing off nerves in the area. She also has a nerve problem which stems from her back going down to her foot where she feels numbness. My mother is 80 years old and it kills me to hear her suffering. She has been woken up from sleep she tells me due to a throbbing that doesn’t stop for the longest time and has had 3 epidurals, 2 I believe which were done maybe 1-2 months apart. The only medication I know of she has been given is Gabopentin which she doesn’t want to take unless absolutely necessary and even with this she is cutting it in half as she doesn’t want to feel drugged during the day. I am looking for a specialist that has some kind of knowledge of what to do about her problem. No one should have to suffer. As a side note, I ordered her a supplement I found online called Nervehealth which is supposed to be made up of many different vitamins essential to help repair and restore the nerves.
Hi Lisa,
We recommend your mother seeing a pelvic floor physical therapist. Please use the link below to find one in your area.
https://pelvicguru.com/2016/02/13/find-a-pelvic-health-professional/
Regards,
Admin
Hello,
My mom has been suffering from pelvic pain for 8 years.she has become a shadow.tshe was a vibrant energetic beautiful confident woman in her early 60s, to become a handicapped crippled human being.
pain is now constant. She has panick attacks, she can’t walk well,she has vision troubles when the pain is too acute to list only a few of the ailments.
doctors never diagnosed pn or pne.there is no diagnosis. She tried nerve block,medication, pt, acupuncture,pulse stimulation (they inserted a device that released pulsations on the nerves), and I believe I forget other treatments.she had her colon, intestines, bladder,kidneys,checked.
She lives in Europe.
What do you suggest?
Thank you for any advice
Stephanie
Hi Stephanie,
Please use the link below to find a pelvic floor physical therapist in your area.
https://pelvicguru.com/2016/02/13/find-a-pelvic-health-professional/
Regards,
Admin
Hello,
I have a chronic disorder called Vulvodynia. Burning, tingling, stinging and pain in my labia and vaginal area that radiates down the back of thighs. I have had this disorder for over 20 years. I have seen many many Dr.s just to get diagnosed. I have been through surgery to remove raw skin which only made my condition worse. I’ve been on different med’s and nothing really seems to help. I’ve been to a pain clinic and they put me on Gabipetin which makes me so sleepy. My OBGYN wants to have me get a pelvic MRI. Would this even show if I had this nerve problem?
Please any advice would help. I live in Hershey/Harrisburg PA area.
Thank you.
Joyce
Any advice would help
Hello,
We recommend being evaluated by a pelvic floor physical therapist,. You can use the link below to find one in your area.
https://pelvicguru.com/2016/02/13/find-a-pelvic-health-professional/
Regards,
Admin
Hi Stephanie, I had treatment for stage 2b Cervical Cancer in 2010 and I now have numbing in my pelvis to my pubic area. I have nerve damage effecting my legs which affects me daily, the only diagnosis I got was Post Neurogenic Chemotherapy Symptoms. I did get a diagnoses for neuropathy from the Oncologist a year post treatment also. I did have nerve conduction tests which revealed that there is Possible Nerve Root Plexus damage. I have osteoarthritis in both hips and a small fracture in the left one. I was diagnosed with insufficiency changes in the Sacral Ala about 2 years post treatment which showed up less pronounced on a further scan. I have Severe Vaginal Shortening as a result of my treatment. I was due to have a Vaginoplastry but I cancelled it as I had a TVTO mesh procedure for incontinence a year after my treatment. I was concerned that the reconstruction would involve cutting the tape. I have a lot of issues and I have found your information very helpful, June
Thank you so much for such an informative post. I have just recently discovered the PN because of an amazing dermatologist who really thought outside the box.
I had a full hysterectomy Sept 2015 for Ovarian/Uterine cancer. I then had chemo and radiation just to be sure since pathology showed microscopic cells on my omentum. The following August I began having abdominal pain which turned out to be (after multiple ER visits) a partial bowel obstruction. I had a bowel resection which removed the lower part of my intestine, ileosacal valve and the upper part of my large intestine (my surgeon said I had radiation damage to these parts even tho the dose was at the absolute minimum). I did not recover well and ended up back in the hospital twice after. On my third stay I developed a terrible debilitating anal itch. I had multiple docs come and inspect me and they all said that everything looked normal but the itch made me cry it was so bad.
I’ve been dealing with this since then (Oct 2016) and it was only last July that I had an amazing Dermatologist that suggested it might be neuropathic. I finally found the Thank you so much for such an informative post. I have just recently discovered the PN because of an amazing dermatologist who really thought outside the box.
I had a full hysterectomy Sept 2015 for Ovarian/Uterine cancer. I then had chemo and radiation just to be sure since pathology showed microscopic cells on my omentum. The following August I began having abdominal pain which turned out to be (after multiple ER visits) a partial bowel obstruction. I had a bowel resection which removed the lower part of my intestine, ileosacal valve and the upper part of my large intestine (my surgeon said I had radiation damage to these parts even tho the dose was at the absolute minimum). I did not recover well and ended up back in the hospital twice after. On my third stay I developed a terrible debilitating anal itch. I had multiple docs come and inspect me and they all said that everything looked normal but the itch made me cry it was so bad.
I’ve been dealing with this since then (Oct 2016) and it was only last July that I had an amazing Dermatologist that suggested it might be neuropathic. I finally found the http://www.pudendalhope.info/ site which has shed quite a light on what I’m going through.
Unfortunately for me this damage expresses itself mostly with itch (which may sound better than pain but believe me it is maddening). No one had been able to tell me what was happening. I now have at least some hope that I can get some treatment (I’m currently on Dicepramine. I was on Gabapentin but the side effects made it troublesome). My dermatologist is by no means an expert – she has merely come across it. I have a fairly restrictive insurance – it’s tied to Boston Medical Center, tho I do have access to many docs outside, Particularly Beth Israel.
Now that I’m convinced that this is what is going on, I need to find some professionals that know what to do (more than just medication – I need to find someone who can formally diagnose me and then refer me to proper treatment). I’m hoping you might be able to help by recommending someone in Massachusetts that could help me.
Thanks so much!
Karen
Hi Karen,
Please contact our Lexington, MA office at 781-862-5222.
Regards,
Admin
I fractured my right pelvic ramus in a skiing accident 24 years ago. I also have a long history of urinary tract infections prior to and since my fracture. I have recently gained 45 pounds in three months. I woke up Sunday with a severe stabbing electric shock like pain on the right side of my clitoris. It is now Thursday. I am on an antibiotic for urinary burning and frequency; however the clitorial pain is relentless and I have only minor relief when sitting on the toilet. Standing does not relieve the non stop pain. I am an RN, have had two vaginal births, broken bones, etc., and have never pain this intense for nearly 90 hours now. I took o leftover Vicodin from a dental procedure with 0 relief. I almost feel suicidal. I have not been able to sleep for days now, I have also tried anti-inflammatory drugs (ibuprofen). I would rate the constant pain 8 out of 10. The pain is actually nauseating me. I have been meditating without success. I also will not have insurance for 10 more days. I eel the physician’s in my area will have little idea on how to treat this problem. Please advise..I cannot continue to live in this much non stop pain. Thank you, Stephanie
Author Stephanie Prendergast says:
Hi Stephanie, I understand this is stressful and we can try to get you to someone who can help. It is plausible that you have pudendal neuralgia and pelvic floor dysfunction based on your symptoms. You can find a provider through the pelvicpain.org find a provider section or the Pelvic Guru website, listed on the homepage of our blog. You will most likely need a physician and a pelvic floor physical therapist and they will be able to help you.
I think I might be headed for some trouble. I had a ceasarian delivery in 2008, a hysterectomy and rectocele repair in 2012, another rectocele repair with vaginal vault suspension and bladder correction all with mesh in 2013, 3 months ago in 2017 I had a hemorroidectomy and rectocele repair. Last week I started having pain that seems to come from my rectum and travels up the vulva and into clitoris that is so sensitive it almost feels cold and I can’t stand anything touching it. Urinating and defecating are difficult due to pain or inability to relax pelvic floor due to fear of pain. Now my sciatica is hurting in my buttocks. All of this pain is on my right side and I have never experienced it before but after reading your post I am thinking I have a nerve issue. I don’t even know what the next step should be or if it will go away on its own. Any advice would be appreciated
Hi Rebecca,
It sounds like you may have a pelvic floor disorder. Unfortunately we cannot make specific recommendations without evaluating you. We would be happy to evaluate you in one of our locations or you can use our website to find a pelvic floor physical therapist in your area that can help.
Regards,
Admin
Hi, I am thinking that maybe I have pudental nerve entrapment. I got an copper iud up 5 years ago and instantly I got sexual numb in my genitals (clitoris, vagina, anus, cervix). I got the iud out after 3 months, but the numbness was still there and is still today. I have uncomfortable tightness in my cervix or left side of my vagina, at the pudental nerve area. I cannot get sexual aroused, because it feels like something is blocking me from the sensations. Can you please help? Does this sound like pudental nerve entrapment or pelvic floor tension? I have been doing a lot of things to get better, stretching, excising, vaginal massages.. but nothing seems to work.
It sounds like you may have a pelvic floor disorder. Unfortunately we cannot make specific recommendations without evaluating you. We would be happy to evaluate you in one of our locations or you can use our website to find a pelvic floor physical therapist in your area that can help.
Could a possible cause for PN can be bicycling 20 miles a day (sitting on that seat for an intense 2-3 hours) ?
Can someone have PN if the only symptom is a dull testicular pain and all other tests: sonogram, hernia check, kidney stone check, blood tests all came up clean?
I had never had this pain until 3 weeks ago. I started riding a bike daily 3 months ago about 15 to 20 miles daily and had to stop. The doctors can not figure it out and it has not improved. I asked about PN and nobody is familar enough with it.
Hello,
We recommend being evaluated by a pelvic floor physical therapist,. You can use the link below to find one in your area.
https://pelvicguru.com/2016/02/13/find-a-pelvic-health-professional/
Regards,
Admin
Hi,
My PN symptoms are: 1) extreamly irritable chronic ‘tingling’ sensation on the penis tip (dorsal nerve), which hasn’t gone away for 5 months, 2) inconsistent penis pain (base, tip, sometimes glans area), 3) urinary urge symptoms (likely mimicked by the penis tip tingling, 4) red penis tip meatus and sometimes purple ‘bumps’ on the meatus
I’ve gone through the whole urologist route (prostate fine, no STD’s etc).
Also the pelvic floor specialist route (internal anal pelvic floor exam performed showing no trigger points and no tightness – she said I’m more weak / normal if anything). PT stretches did noting to relieve the pain/irritation at all unfortunately.
I’m at the stage now where I’m currently seeing an osteopath who happens to know about PN symptoms, he’s performing acupuncture and manipulation techniques on me (note: no alleviation as yet, 3rd week in, if anything symptoms are actually increasing in a negative way). He did say though this would likely happen initially and to give it some time as the treatment continues. He mentioned my hips are tight and there is a lot going on ‘down there’ muscular-wise (including very weak glutes), which could be causing my PN symptoms to occur. Perhaps my Obturator Internus muscle is catching my PN? My left side feels a lot ‘tighter’ when performing hip stretches.
I’m also booked in for an MRI, pudendal nerve conduction test and PN nerve block.
What do you suggest based on the above please? The penis tip pain/tingling is driving me mad.
Thanks,
David
It sounds like you may have a pelvic floor disorder. Unfortunately we cannot make specific recommendations without evaluating you. We would be happy to evaluate you in one of our locations or you can use our website to find a pelvic floor physical therapist in your area that can help.
Dave, Any luck yet. I have the exact same symptoms. Pain at tip of penis is driving me insane.
Dave,
Anything work for you yet. I have the exact same symptoms. Burning at tip of penis is driving me insane. Have gone through urologist, Phyical Therapist. PT has helped me a bit. Other thing that has helped was wearing a compression underwear so that there was no friction during walking etc. Please share if anything has helped you.
i have read part 1 in the demystifying pudendal neuralgia series but have not found and follow up blogs. if there are any more recent in the series please let me know how to find it or them. i have a particular interest in PN or PNE, FYI i had a procedure several years ago performed by Dr. Conway he is a great doctor. I elected to have bilateral pudendal neurectomy but after about one year the nerves reconnected and i have full sensation and increasing burning pain.
Thank you for the thorough articles which gives me Hope. Can you recommend a PT in Montreal Canada? Thanks
Hi Yan,
We recommend http://www.amadeakezarpt.com
With the growing world of regenerative medicine. Nerve Hydrodissection and advanced musculoskeletal ultrasound scanning seems to be able to help view the Pudendal nerve and release the surrounding fascia that may or may not be entrapping it. This modality seems to be bringing many patients (digging through Facebook groups) relief and resolving years of pelvic nerve pain.
I’ve been having pain on and off for 5 years now. I’ve seen many different doctors and I’m currently seeing a pelvic floor physical therapist. My pain is located on my right side only and here lately it’s been starting on my left side as well. It seems to be occurring before my cycle. My pain is located in 3 different spots on my right side. Not all spots hurt at the same time it’s usually one or the other. Spots are all located where the nerve is at. I don’t think physical therapy is helping I’ve been going for almost a year. Do you think this is what I have since it’s not helping? What should I try next? I’m starting to lose my mind.
I’m a 69 year old male with a question but first of all I’d like to mention decades of glute pain, perineal pain, constipation, urinary hesitancy and testicle pain. Now for my question -I also have what feels like muscular pain. A burning, stabbing pain in the area of my bladder-it’s center line and about 5 inches across and a half inch wide and is felt when trying to wear anything elastic around my waist. I’ve tried larger size underwear but the pain persist. Could this pain, which last for hours after removing the elastic, be caused by the pudendal nerve? Thank you for your time.
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