By Stephanie Prendergast, PHRC Cofounder
I treated my first patient with Pudendal Neuralgia in 2002. As a young, excitable pelvic floor physical therapist, I was on a mission to help people suffering from pelvic pain and thought it would be just like what they said in PT school: stretch, strengthen, achieve goals, discharge. So when my patient began treatment for PN, I was already anticipating the nice thank-you note I’d soon receive. However, at that time I had no idea how much pain and suffering I would witness in the coming years, how frustrated I would become with the medical community, the healthcare systems in the US and abroad, and with the overall lack of guidance when trying to treat a syndrome that prominent medical institutions did not believe was even real. For the record, every peripheral nerve in the body is vulnerable to ‘injury’ and therefore is capable of becoming a ‘Neuralgia’. Additionally, any person with PN has likely been told at least once that Pudendal Neuralgia is not a ‘thing’, amongst other absurd and technically inaccurate statements.
This Friday, Drs. Mark Conway (Gyn, pelvic pain specialist, and PN surgeon in New Hampshire) and Sheldon Jordan (Pain management and pelvic pain specialist in Los Angeles) and myself are presenting at the International Pelvic Pain Society’s annual scientific meeting the topic “Interdisciplinary Management of Pelvic Pain” at the International Pelvic Pain Society’s annual scientific meeting. I subtitled my portion of the talk “Pudendal Neuralgia: Then and Now”. I’ll explain why.
The diagnosis and treatment of the disorder has changed tremendously over the years. Many people in the general medical community and pelvic pain specialists have expressed desire to better understand PN. Providers are frustrated they have not been able to help their patients in a manner or timeframe that is understandably expected. Drs. Conway, Jordan, and all of the therapists at PHRC treat a high volume of patients with pelvic pain specifically, PN. We are honored that we were invited to speak, and will be consolidating the evidence and our clinical knowledge on PN.
PHRC is dedicating this week and next week’s blog to PN. This week, we will take a look at our previous blog posts on the topic, putting them in one accessible location. Next week, we will expand on some of the topics previously covered. Spoiler alert: we’re discussing sensitive nervous systems, changing your opinion about pain, how to think of it as a treatable diagnosis, not just a symptom of another problem. Additionally, on November 5th, Drs. Conway, Jordan and I will be on The Pelvic Messenger radio blog to answer your questions! So here we go.
Our first blog on PN, ” How do I know if I have PN or PNE?” was posted on November 14, 2013. The post had to be broken into several parts because of how much needed to be said on this topic. It was then that we realized how important it would be to shed light on this topic. Additionally at the time of the first post, the PN vs PNE question was front and center our minds as well as in the minds of our patients who had any sort of pain with sitting. You can read our first PN blog HERE.
In the early years of the PN diagnosis, physical therapy was not considered the first-line of treatment for PN like it is now. In fact, it was barely considered AT ALL. Understandably much has changed since then, so we decided to write a post about how pelvic floor therapists today approach PN and PNE treatment, while emphasizing the protocol that our PHRC therapists follow. We named the blog “The Role of PT in Treating PN” and truth be told, it took off (more about that later, but spoiler alert: it inspired a portion of our book Pelvic Pain Explained!). You can read that blog HERE.
As we continued demystifying pudendal neuralgia for our readers, we realized that there was vaulable information to be found in the stories of those treating PN caused by PNE. So, we asked Drs. Mark Conway and Hibner to chime in for the segment “Your PNE Questions Answered”. Again, we were overwhelmed by the response we received from our readers and the medical community. The internet (in our small pelvic PT world mind you) EXPLODED with hundreds of questions, comments, and stories from readers expressing their gratitude and for some, their frustrations, about their experience with PN treatment. So, we wrote a part two.
Just when I was beginning to be somewhat satisfied with the reliable information we’d made available, PN was “covered” by US News and World Report. In my opinion, the article created a dismal landscape and seemed to undermine all the hard work and efforts of those in the pelvic pain community who strived to paint an accurate picture of PN. The writers were well-intentioned I am sure, however the message missed the bigger picture, prompting next blog and the genesis of the upcoming lecture: “PN Wrecking Ball: Why Media’s Words Matter”, which you can read HERE.
As I look back on my own posts, I realize that even though PHRC shared so much information with our readers, there is still room for improvement. As you can see, the material for understanding PN is lengthy, and we’re not done yet! Stay tuned for a future blog that will talk about an often missed point: how to troubleshoot and resolve treatment plan ‘hiccups’. To be clear, this is the norm, not the exception. A patient will either not tolerate, or not respond to at least one form of treatment, but, these challenges CAN be resolved.
All my best,
Stephanie Prendergast, MPT
Stephanie grew up in South Jersey, and currently sees patients in our Los Angeles office. She received her bachelor’s degree in exercise physiology from Rutgers University, and her master’s in physical therapy at the Medical College of Pennsylvania and Hahnemann University in Philadelphia. For balance, Steph turns to yoga, music, and her calm and loving King Charles Cavalier Spaniel, Abbie (Abbie is a daily fixture at PHRC Los Angeles). For adventure, she gets her fix from scuba diving and global travel.
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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
FAQ
What are pelvic floor muscles?
The pelvic floor muscles are a group of muscles that run from the coccyx to the pubic bone. They are part of the core, helping to support our entire body as well as providing support for the bowel, bladder and uterus. These muscles help us maintain bowel and bladder control and are involved in sexual pleasure and orgasm. The technical name of the pelvic floor muscles is the Levator Ani muscle group. The pudendal nerve, the levator ani nerve, and branches from the S2 – S4 nerve roots innervate the pelvic floor muscles. They are under voluntary and autonomic control, which is a unique feature only they possess compared to other muscle groups.
What is pelvic floor physical therapy?
Pelvic floor physical therapy is a specialized area of physical therapy. Currently, physical therapists need advanced post-graduate education to be able to help people with pelvic floor dysfunction because pelvic floor disorders are not yet being taught in standard physical therapy curricula. The Pelvic Health and Rehabilitation Center provides extensive training for our staff because we recognize the limitations of physical therapy education in this unique area.
What happens at pelvic floor therapy?
During an evaluation for pelvic floor dysfunction the physical therapist will take a detailed history. Following the history the physical therapist will leave the room to allow the patient to change and drape themselves. The physical therapist will return to the room and using gloved hands will perform an external and internal manual assessment of the pelvic floor and girdle muscles. The physical therapist will once again leave the room and allow the patient to dress. Following the manual examination there may also be an examination of strength, motor control, and overall biomechanics and neuromuscular control. The physical therapist will then communicate the findings to the patient and together with their patient they establish an assessment, short term and long term goals and a treatment plan. Typically people with pelvic floor dysfunction are seen one time per week for one hour for varying amounts of time based on the severity and chronicity of the disease. A home exercise program will be established and the physical therapist will help coordinate other providers on the treatment team. Typically patients are seen for 3 months to a year.
What is pudendal neuralgia and how is it treated?
Pudendal Neuralgia is a clinical diagnosis that means pain in the sensory distribution of the pudendal nerve. The pudendal nerve is a mixed nerve that exits the S2 – S4 sacral nerve roots, we have a right and left pudendal nerve and each side has three main trunks: the dorsal branch, the perineal branch, and the inferior rectal branch. The branches supply sensation to the clitoris/penis, labia/scrotum, perineum, anus, the distal ⅓ of the urethra and rectum, and the vulva and vestibule. The nerve branches also control the pelvic floor muscles. The pudendal nerve follows a tortuous path through the pelvic floor and girdle, leaving it vulnerable to compression and tension injuries at various points along its path.
Pudendal Neuralgia occurs when the nerve is unable to slide, glide and move normally and as a result, people experience pain in some or all of the above-mentioned areas. Pelvic floor physical therapy plays a crucial role in identifying the mechanical impairments that are affecting the nerve. The physical therapy treatment plan is designed to restore normal neural function. Patients with pudendal neuralgia require pelvic floor physical therapy and may also benefit from medical management that includes pharmaceuticals and procedures such as pudendal nerve blocks or botox injections.
What is interstitial cystitis and how is it treated?
Interstitial Cystitis is a clinical diagnosis characterized by irritative bladder symptoms such as urinary urgency, frequency, and hesitancy in the absence of infection. Research has shown the majority of patients who meet the clinical definition have pelvic floor dysfunction and myalgia. Therefore, the American Urologic Association recommends pelvic floor physical therapy as first-line treatment for Interstitial Cystitis. Patients will benefit from pelvic floor physical therapy and may also benefit from pharmacologic management or medical procedures such as bladder instillations.
Who is the Pelvic Health and Rehabilitation Team?
The Pelvic Health and Rehabilitation Center was founded by Elizabeth Akincilar and Stephanie Prendergast in 2006, they have been treating people with pelvic floor disorders since 2001. They were trained and mentored by a medical doctor and quickly became experts in treating pelvic floor disorders. They began creating courses and sharing their knowledge around the world. They expanded to 11 locations in the United States and developed a residency style training program for their employees with ongoing weekly mentoring. The physical therapists who work at PHRC have undergone more training than the majority of pelvic floor physical therapists and as a result offer efficient and high quality care.
How many years of experience do we have?
Stephanie and Liz have 24 years of experience and help each and every team member become an expert in the field through their training and mentoring program.
Why PHRC versus anyone else?
PHRC is unique because of the specific focus on pelvic floor disorders and the leadership at our company. We are constantly lecturing, teaching, and staying ahead of the curve with our connections to medical experts and emerging experts. As a result, we are able to efficiently and effectively help our patients restore their pelvic health.
Do we treat men for pelvic floor therapy?
The Pelvic Health and Rehabilitation Center is unique in that the Cofounders have always treated people of all genders and therefore have trained the team members and staff the same way. Many pelvic floor physical therapists focus solely on people with vulvas, this is not the case here.
Do I need pelvic floor therapy forever?
The majority of people with pelvic floor dysfunction will undergo pelvic floor physical therapy for a set amount of time based on their goals. Every 6 -8 weeks goals will be re-established based on the physical improvements and remaining physical impairments. Most patients will achieve their goals in 3 – 6 months. If there are complicating medical or untreated comorbidities some patients will be in therapy longer.
Comments
Thank you Stephanie for your tireless work on behalf of your patients and the rest of us trying to manage our Prudential Neuralgia conditions.
I love your focus here on the evolution of what you’re teaching approach has been depending on what is needed.
May every word you speak at this next conference be blessed by all of our gratitude.
Hello John,
Thank-you for your kind words!
All my best,
Stephanie
I have pudendal nerve damage from a surgery in 2009 to remove my ovaries and some pelvic adhesions. I did have pelvic pt for about a year with good results, but still suffer chronic pain and take Lyrica. Now, in the last few months I have begun to have a terrible burning pain in my right lower pelvic area. US shows some sort of calcified mass there where the ovary was previously taken out ( which also had a calcified lesion on it). My uterus was left intact and has 5mm thickness which concerns the gyn doc. I am in terrible pain….what do I do next ? Is this something that would benefit from pelvic pt again ?
Hello Mrs M,
We recommend that you consult with a local pelvic floor therapist. He or she will be able to give you a second opinion, and determine which treatment options would be best for you. I may be able to recommend a specialist. Where are you located?
Kinda Regards,
Stephanie
Stephanie, I am so so proud of you, Your work is so hiccup so important!! Excited about the book, and this weekend as well! Wish you could rest, sorry! I miss you and love you. Susan
Thanks for the kind words Susan! I hope all is well!
Thank you so much for taking an interest in this topic and patient population! As someone who has overcome PN twice, (yes, twice!), I can say that I would have never gotten better had it not been for you and other therapists putting the proper information “out there” on the internet for me to find.
Stephanie, I had two J&J Ethicon Procare pelvic mesh devices implanted in July 2010 for a rectocele and cystocele due to pelvic prolapse and mild urinary incontenence from 5 full term pregnancies and two miscarriages.
The mesh is now protruding through my vagina, and I have developed severe sciatic pain and terrible skin problems on both lower legs, arms, and upper back and neck.
Do you know of any such problems or treatments? I have put off removal of the mesh because I fear multiple surgeries.
I would appreciate any information you might provide.
Sincerely,
Susan Gaynor
Hello Susan,
Please contact our office for a complimentary fifteen minute consult. (424) 293-2305.
Best,
Stephanie
I had vaginal mesh implanted twice for a total of 5 mesh slings, 2 surgeries to implant. The first 3 did not hold so the Dr. Put in two more over the previous 3…. Then after PT, many pelvic floors injections, and multiple surgeries to remove the mesh,then saturation of the pudendal nerve with 2 different anesthesias’. I am left with uncontrollable pain not only in the groin and buttocks area, but the pain runs down both legs and hips. I now have numbness in parts of my legs and both feet. As well as my groin. It has now been 7 years, and I am told that this is now my new normal. I juice daily to replace nutrients, because pain makes you not want to eat. I take turmeric for inflammation and narcotics to help the spams in my bladder and pelvic floor, but nothing takes the pain away. Any comments may help…..
Hello Elizabeth,
I am sorry to hear about your situation. I may be able to offer you a therapist recommendation. Where are you located?
Best,
Stephanie
Elizabeth, I mentioned this in a comment above, but will also post this reply to your comment to make sure you see it. I admin a mesh-injury support group on Facebook called Mesh Problems. We have 1,100+ members who have been injured by mesh implants very much like the issues you’re describing. I personally have had 7 surgeries over the past 5 years since my mesh implant for prolapse, and am still in quite a bit of pelvic pain myself. Pelvic physical therapy helped me a great deal after my mesh was fully removed – my pelvic muscles were in a tight spasm, and it was adding to the nerve pain to the point it was unbearable. Once the pelvic therapist was able to get all my muscles relaxed again, the pain lessened a great deal. Please feel free to join our Mesh Problems group if you would like – there is lots of great information in the group’s files, plus wonderful support from the members. Hope to see you there. Hang in there, there is hope. 🙂 https://www.facebook.com/groups/meshproblems/
Thank-you for the kind and positive comment. It is so important for people to know that they can get better.
Your dedication to this condition is truly commendable and i wish i lived closer to one of your offices because i’d be there in a heartbeat.
Is there a therapist you can recommend in the Buffalo,NY area? i’ve been in agony the last 4 yrs and everyone i’ve seen here looks at me like i’m crazy.
Thank You,
Chris
Hello Chris,
I’m sorry, but we do not have a therapist recommendation in Buffalo. Are you able to travel elsewhere?
All my best,
Stephanie
We live near Toledo, Ohio and I have been suffering from PN/PNE for the last 15 years. I have been to several PTs over the years with no success. Do you know of any Pts in my area who you would recommend.
I read your latest post where you and Drs Conway and Jordan are going to be on The Pelvic Messenger radio blog 11/5.
What do I have to do to listen to it?
Thank you
Hello Rheyma,
Unfortunately, we do not have a recommendation in Ohio at this time. Here is the link to our radio blog:
http://www.blogtalkradio.com/pelvicmessenger/2015/11/06/interdisciplinary-management-of-pudendal-neuralgia
Best,
Stephanie
Does anyone know of a good doctor who treats PN/PNE closest to the Atlanta Georgia area?
Hello Valerie,
We are not familiar with any therapists in Atlanta, but can recommend other therapists in the area. Here is their information:
Howell Lone PT Auburn GA (770) 995-5242 [email protected] Physiotherapy Associates Lawrenceville
Hunt Jenny PT Alphretta GA 678-819-8720 [email protected] Provenance Rehabilitation of the Greater Atlanta Area
Best,
Stephanie
Do you have a recommendation for a therapist near Pittsburgh, PA? My father in law was recently successfully treated for prostate cancer without surgery, but is getting up to urinate every 90 minutes at night, and can’t stand to urinate as he developed fecal incontinence when urinating a year ago. The fecal issue is what drove him to the doctor initially. The prostate cancer was very low grade and only radiation was used in treatment. I’m not sure if drugs were used, too, but no surgery. I’ve had severe PN and my treatment takes place in Texas so I have no idea who to send him to in PA. Any help would be appreciated.
Hello Ashley,
Christine Wood, PT is located in Pittsburgh, PA. Here is her information:
(412) 967-9229
Fox Chapel Physical Therapy
Best,
Stephanie
Can you recommend a Dr. For diagnosis in CA. I live in Fresno, Central Valley and have not found anyone near by. I have a local PT, but we were thinking that I should try to get a firm diagnosis. I do have symptoms of pudendal nerve issues and inability to sit or have intercourse without pain. I have been seen at UCSF pain mgmt with some success with pudendal nerve blocks/abrasions, but that has not helped with the sitting. Overall my pain has decreased a great deal, but I would like to be able to sit again in a regular chair. San Francisco is hard for me, LA is further, but may be easier to navigate and I have relatives in the general area. I just don’t know what to do next. But I would be willing to travel if I know that there is a good MD out there to help. Preferably one that takes insurance.
Hi Penny,
Please use the below link to find a provider near your home.
https://pelvicguru.com/2016/02/13/find-a-pelvic-health-professional/
Regards,
Admin
I had pudendal nerve blocks with Dr. Weiss in SF but they did not help. He still thinks I have pudendal neurlgia and my symptoms fit the bill. I also have bad disc degeneration in L4/L5 with herniated discs and stenosis that may require surgery decompression and fusion. But my symptoms fit PN perfectly….Should I see Dr. Beco and go to belgium? Someone on this said he had a great surgery with him! Most of the pelvic floor PT has not helped much, but willing to try again if you now the best in the East Bay….been suffering too long…..AJ
Hi Aj,
Please call our San Francisco or Berkeley location.
Regards,
Admin
I had pudendal nerve blocks with Dr. Weiss in SF but they did not help. He still thinks I have pudendal neurlgia and my symptoms fit the bill. I also have bad disc degeneration in L4/L5 with herniated discs and stenosis that may require surgery decompression and fusion. But my symptoms fit PN perfectly….Should I see Dr. Beco and go to belgium? Someone on this said he had a great surgery with him! Most of the pelvic floor PT has not helped much, but willing to try again if you now the best in the East Bay….been suffering too long…..AJ
Hi Aj,
We have locations in Berkeley and San Francisco, please call them and they would be happy to schedule you.
Regards,
Admin
My sacral fracture and spinal cord compression from L2-3 stenosis were mud-diagnosed as PNE. My rehab fix did MRIs and sent me to my spine surgeon who did laminotomy making more room. I had instant relief.
Hi Stephanie,
I left a lengthy description on your forum a few months ago but it didn’t make it through admin. Perhaps it was too long winded or confusing. I have since received a diagnosis of pudendal nerve ‘damage’. It came about through cycling which I gave up 9 months ago. The pain in the pelvis is still present albeit things have improved slightly in the last 6 months. My libido and ED are still apparent though.
My Doctor has referred me to a pain management clinic in Manchester, UK but has said he has found nobody in the UK that treats PNE. Do you know of any Physical Therapists in the UK that can help me?
Thank you for this resource and all of your great work. I would like to share my won story with others at some point.
Many thanks
Hi Ryan,
We recommend Mary Elliot in London. http://www.simplywomenshealth.co.uk/pages/mens-pelvic-health.php
Regards,
Admin
Hi Stephanie,
I have just found your site when researching information on PN/PNE. I was diagnosed 5 days before having 2 major Thoracic and lower spine surgeries for scoliosis this June . Had I known more of this condition prior to the surgery I would not have had these surgeries. I had Botox injections done 6 wks after surgery but only lasted 1 month. This past week is dealing with surgical pain and now PN.
Your blog is a blessing and I am grateful for all the information I can learn to manage this intolerable condition.
Thank you so very much!!
Charlette
Does anyone have recommendations for a physical therapist as well as physician who can treat pelvic floor dysfunction as well as pudendal nueralgia in the Pittsbugh, Pa area?
Thank you,
Tara
Hi Tara,
We recommend Janice Bryant (412) 422-4775 and Christine Woods (412) 967-9229.
Regards,
Admin
I have been suffering for almost 2 years now with different diagnoses – lumbar disc issues; hip issues; possible pudendal issues, etc. I’ve had PN blocks with no improvement. I’ve also had spinal epidurals and cortisone shots in hip and ischial. Once the numbing wears off, I’m back to the same pain. Sitting is unbearable. I am now scheduled to begin pain management, however, I’d like to know if there is anyone Dr. Prendergast would recommend in the Baltimore, Maryland area aside from Dr. Richard Marvel. Please advise. Thank you!!!
Hello,
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
I have had PN for 10 years. PNE surgery 3 years ago in Phoenix with Dr. Castellanos. Still having pain chronically. Is there a PT for PN here in Phoenix?.
Hello,
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
Hi. I’m looking for a PT in chicago that is an expert in PN. I have been PT treated 20 sessions for pelvic floor with no success. I am now being told I have PN. I’m in bad shape now for 6 months. Please help !!
Hello, please use the following to help locate a PT in your area https://pelvicpain.org/IPPS/Patients/Find_A_Provider/IPPS/Content/Professional/Find_A_Provider.aspx?hkey=ac3c51ec-0939-499f-a6a0-c72d0aa2f427