By Stephanie Prendergast and Elizabeth Akincilar-Rummer
Tony is one of those people who seem superhuman. In his early 30s, he’s lean and athletic. When he isn’t chasing after one of his three young children or helping to run a successful family business, you can find him surfing, hunting, snowboarding, golfing, swimming, or playing basketball.
It’s hard to believe that at one time, this guy who has such a passion for living was all but convinced that his life was over. But there was a time, not all that long ago, when he was sure that he’d never participate in another sport that he loved, let alone be able to work or even have relations with his wife.
It was on an unseasonably warm afternoon in February back in 2003 when Tony’s full and happy life took an unexpected detour. On that day, as usual, he was in active mode, attempting to pull off the perfect handstand when all of a sudden, he felt a sharp pinching pain in his lower abs.
Three doctors later, he was diagnosed with an “abdominal strain” and prescribed core-strengthening exercises. The exercises made his pain worse, and in a matter of weeks his symptoms exploded. The sharp pain in his abs snowballed into pain with sitting, constant perineum and groin pain, and a burning pain at the tip of his penis.
Unable to find any answers from the doctors he visited, he turned to the Internet. That’s when the fear and panic set in. After spending hours online, he discovered that his symptoms were a match with a disorder called “pudendal nerve entrapment”or “PNE.”
After reading a litany of stories about PNE, he was convinced that he needed surgery as soon as possible to free his entrapped pudendal nerve. Otherwise, according to the information he was uncovering, his symptoms would continue to worsen. He even contacted one of the doctors mentioned in the online forums who performed the surgery. The doctor encouraged him to fly out and schedule the surgery with him right away.
“I was terrified,” he recalls, “I was reading all of these horror stories, and I believed that if I didn’t get surgery as soon as possible, I would end up impotent and incontinent. Even with surgery I was afraid of what my life was going to become.”
However, before he signed up for surgery, he decided to see one more doctor in San Francisco. Thankfully, that doctor was one of the few in the country in the know about male pelvic pain. The doctor explained that trigger points and muscle spasms in the pelvic floor—and in Tony’s case, in the abdomen—have the potential to cause all of the symptoms he was experiencing. The doctor then prescribed pelvic floor PT to treat his pain. Finally, he was getting what seemed like a reliable explanation for what was happening to him. Plus, there was a treatment option available that was much more conservative than going under the knife.
“I admit at first I didn’t believe PT was going to help me,” he says. “But I decided I would just do it as a final effort before I got the surgery.”
After the first session with Stephanie, Tony felt a slight bit of relief. Ultimately, with regular PT sessions—at first twice weekly and then weekly—his pain and symptoms began to diminish, until eventually they were gone altogether.
“Today I have zero pain,” he says. “But it didn’t go away overnight,” he is quick to add. “It took time, patience, and a lot of commitment. And there were times during my sessions with Steph when I would break down because I was still so anxious about all that I had read on the Internet.”
Tony began PT with Stephanie in January of 2004, and by January of 2006, he was completely symptom-free. Today he is living an unrestricted, active life without pain.
Unfortunately, Tony’s struggle with pelvic pain is all too common. Research shows that between 8% and 10% of the male population suffers from pelvic pain. But that number is likely higher because studies also show that 50% of men will deal with prostatitis at some point in their lives, and pelvic pain in men is consistently misdiagnosed as prostatitis.
Tony’s ordeal is also common in that, because he couldn’t get answers from his doctors, he turned to the Internet for information, a move that led him down a dark road of misinformation. The reality is that men with pelvic pain have an even harder time getting a proper diagnosis and treatment than women with pelvic pain.
For one thing, the medical community systematically misdiagnosis any pelvic pain symptom in men, —whether perineal pain, post-ejaculatory pain, urinary frequency, or penile pain—as a prostatitis infection, despite the absence of virus or bacteria.
The absence of a virus or bacteria simply means a switch in diagnosis from “prostatitis infection” to “chronic nonbacterial prostatitis.” Typically, from there the doctor writes out an Rx for a few months worth of antibiotics and the drug Flomax, and the patient is sent on his way.
In the beginning, because antibiotics have an analgesic effect, patients will actually feel a tiny bit better. But before long the effect wears off, and they’re right back where they started; in pain with no relief.
What’s so maddening about this misdiagnosis loop is that in 1995, the National Institute of Health (NIH) clearly stated that the term “chronic nonbacterial prostatitis” does not explain nor is even related to the symptoms these men suffer. To describe the symptoms they actually do suffer with, the NIH adopted the term: “chronic pelvic pain syndrome.”
The symptoms the NIH listed as being those of pelvic pain are: painful urination, hesitancy, frequency, penile, scrotal, rectal, and perineal pain, as well as bowel and sexual dysfunction. (In addition, in male pelvic pain patients, it’s common for them to feel as though they have a golf ball or tennis ball in their perineum.)
Despite the NIH’s edict, and more than 15 years later, men with pelvic pain are still getting that diagnosis to nowhere: “chronic nonbacterial prostatitis.”
Just ask Derrick.
A successful CFO, and an upbeat family man, Derrick is happily married with three children. It was in early 2002 that he began experiencing perineal pain, post-ejaculatory pain, and pain with sitting.
For nearly three years he was left to flounder in the misdiagnosis loop of chronic nonbacterial prostatitis. During that time, he endured several painful and misdirected tests and procedures at his urologist’s office. At one point, he even believed he had cancer.
“I was pretty frustrated and it was psychologically pretty challenging,” he says. “I was in my early 30s, but I felt very old. It impacted my sex life and all of my relationships.”
Because of the effect it was having on his life, Derrick sought help from a psychiatrist. It was his psychiatrist who referred him to a doctor in San Francisco who diagnosed him with pelvic pain and sent him to Liz for physical therapy.
“PT has been the only thing that has helped my pain and discomfort,” he says. “Now it’s something that I must manage through therapy every two to three months, but I’m okay with that.”
As both Tony and Derrick discovered, the right PT is the best treatment for men suffering with pelvic pain.
For the most part, there are four rungs to the ladder of pelvic pain treatment whether for a man or a woman. They are: working out external trigger points, working out internal trigger points and lengthening tight muscles, connective tissue manipulation, and correcting structural abnormalities.
For male patients, the internal trigger point release and muscle lengthening (internal work) is done via the anus because this is how the PT can gain access to the pelvic floor muscles. (Click here to read more about the right PT for pelvic pain.)
Despite the proven fact that PT is the best treatment for pelvic pain in men, it’s often difficult for men to get into the door of a pelvic pain PT clinic. That’s because not all pelvic floor PTs treat men. This is the second major reason men have an even harder time than women getting on the road to recovery from pelvic pain.
Today, the majority of pelvic floor PTs are women. And, many of these women are uncomfortable treating the opposite sex. For some female PTs, it simply boils down to them not being comfortable dealing with the penis and testicles. Among their qualms: What if the patient gets an erection? How do I deal with that?
Coming from a practice where 15% to 20% of our patients are men with pelvic pain, here’s our advice. If a male patient does get an erection, address it with a simple: “Don’t worry, it happens.” And move on. The bottom line is if you’re in the medical profession, you shouldn’t be intimidated by human anatomy. If you’re afraid to fly, don’t become a pilot. If you hate the water, don’t join the Navy. If you’re a vegan, don’t become a butcher. You get the picture!
Pelvic pain does not discriminate between sexes, and neither should those who treat it. Unfortunately even prominent organizations qualify pelvic pain as a “women’s health” issue. This needs to change.
To be fair, for some female PTs, their discomfort stems from the fact that they have received little to no formal education on how to treat the male pelvic floor. Frustratingly, there is very little education available to PTs on treating the pelvic floor in general. And what education is available is typically focused on the practical treatment of the female pelvic floor. For instance, when PTs take a class they practice on other PTs. So female PTs practice on other women, and when they return to their clinics, they’re not confident treating the male pelvic floor. While this is more understandable than simply not treating male patients because of a social discomfort, it’s still not acceptable.
The good news is that, in general, men are actually less complicated to treat than women. For one thing, there is no vestibule to deal with. The vestibule is an organ that’s full of nerves with the potential to become angry. In addition, the male pelvic floor doesn’t have mucosa that’s exposed to outside bacteria or other agents; therefore, men aren’t as vulnerable as women to UTIs and yeast infections, which can exacerbate the pain cycle. Lastly, male patients aren’t dealing with the large fluctuations in hormones that female patients deal with.
Conversely, what male patients and female patients do have in common is that with the male pelvic floor, as with the female pelvic floor, musculoskeletal impairments such as hypertonic muscles, connective tissue restrictions, pudendal nerve irritation, and myofascial trigger points commonly cause the symptoms of pelvic pain in men.
Another commonality is that lifestyle issues contribute to male pelvic pain just as they do to female pelvic pain. For instance, in Tony’s case, his activities that might have contributed to his pain included a history of doing upwards of 200 sit ups a day, and his regular long bike rides. Plus, at a young age he was told to “pucker” or hold his pelvic floor in order to avoid getting hemorrhoids.
As for Derrick, not only did he sit for long hours every day at a desk, he also had a long commute to and from work.
“In addition to solving my pain issues, PT helped me understand how my problems might have started to begin with, and it taught me to avoid certain potential triggers,” says Tony, who no longer rides a bike, does sit ups, or holds his pelvic floor. In addition, he has set up a standing work station to give him the option of not sitting at work.
For his part, Derrick has cut back on his sitting, and when he does have to sit, he takes frequent breaks to stand up and move around.
Both men are thankful they were put on the right path to pelvic floor PT, and both men have the same resounding advice for other men who are suffering from pelvic pain and are looking for relief. “Try pelvic pain PT!” they both advise. “PT saved my life,” adds Tony.
What Pelvic Pain!? : Click here to read a detailed account of how PT got Tony better.
Now we want to hear from you!
If you are a man with pelvic pain, please share your experiences with us.
All our very best,
Stephanie and Liz
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
Fantastic post, Liz! Thank you so much for getting the word out so these men can get some answers and enjoy life again.
Great article, Most optimistic article I have read on chronic pelvic pain in men. Thank you. Might you know any similar therapy programs in Philadelphia?
Hi Sara,
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
Great article, Most optimistic thing I have read on chronic pelvic pain in men. Thank you. Might you know any similar therapy programs in Philadelphia?
Hi Sara,
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
Great article. I sure could use some direction. My problems seemed to start last year and have only gotten worse. I’m a guy that believes in the old saying just suck it up it will get better on its own. Well by June of 2016 I had enough I went to the ER. At the time it felt like my scrotum was vibrating like your hands feel after using the lawn edger. So they tested for infection, performed a ultrasound on my scrotum nothing could be found. I was released and referred to a urologist. Over the course of 4 months and various office visits I was tested for std’s (which would be impossible 20 years married) prostate examined and PSA levels checked. I was given 3 different types of antibiotics even though urinalysis was negative. I was finally told there is nothing more I can do for you let’s schedule you your next annual check. I see a neurologist every 6 months to get my Kepra refilled and told him about my issues. He said there are some lower to mid level spinal issues that can cause pain there and scheduled me for a MRI. Results were negative as well. Through all this everything has gotten much worse. I now have extreme sensitivity on the head of my penis. Occasional sharp pain when first starting to urinate. It’s a little painful making love to my wife. My penis feels like it’s being pulled inside my body all day long. It is retracted now even more so when I get on the treadmill. The most recent edition is my abdomen is constantly tight. Like I’m flexing but I’m not. At any rate the pain and discomfort I feel really taxes me by the end of the day I’m exhausted. The only thing I’m taking for the pain is naproxen. I’ve also gained about 20lbs since I haven’t been able to really work out. At any rate any advice would be greatly appreciated.
Author Stephanie Prendergast says:
Hi Mark,
It sounds like you have pelvic floor dysfunction and/or pudendal neuralgia. We recommend an evaluation with a pelvic floor physical therapist and they should be able to help you.
I just read your comments and problem with Pelvic Pain. I am currently under the care of a PT after two TURP operations ( IIm questioning having the second one but Doctor agreed to do it). After many many checks for possible reasons for pain in my pelvic area my Eurologist suggested that the pest solution for me was to get on a program with a Physical Therapist who specializes in treating Pelvic Pain issues.
I started with the PT and have had two sessions. She told me it would take some time to be successful. I’m committed to this program because frankly the pain is ruining my life. I guess it doesn’t help that I’m 79 years old. I have been a very active physical fitness person all of my life which has now change where the best I feel like doing is taking a walk around the neighborhood.
Thanks for your information and story !
Don Hodge
Hailey, Idaho
who should you see for weak pelvic floor muscles or pelvic floor muscle dysfunction in young 25 year old male. I work out and lift heavy weights (squats, leg press, bench press) regularly everyday but still have weak PC muscles and always contracting?????HELP PLEASE!
Hi Anon,
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 am 71 years old man. In 1997 I first experienced horrible burning at the tip of my penis. I saw an urologist, who did the cystoscopy and urine tests and said “I don’t know what you have but what ever you have you are not going to give it to your wife”. I went to some other urologist who gave Levaquin 500mg, 1 capsule a day for 10 days. All my symptoms disappeared in 5-6 days. These symptoms came back two years later and Levaquin did not work. Another urologist gave me combinatoin of Doxycycline and Fluconazole. The symptoms disappeared in 4-5 days. Next time a year later when the symptoms came back that combination did not work. One urologist gave me Zovirax and the symptoms went away.
In June 2013, pain in groin, perineum, and burning and pain at the tip of my penis and in supra pubic area returned. I saw some new urologist after cystoscopy and urine analysis he said, “I don’t know what you have but drink lots of orange juice and water and it may go away.”
Then I saw another urologist he said “there is nothing in your system but I’give you Flomax and hope your symptoms will away” That did not help. Then in November 2013 I saw a urologist in prestigious university in Michigan. After hearing about my symptoms without doing any tests he asked me “Has anybody given you Finasteride” I said No. He said “Finasteride is your medication”. Then he did cystoscopy on me. He also said “you may have prostatitis. He should ejaculate more often” I asked how often? He said, at least 2-3 times a week. I said I am 67 years and that’s not possible.
He said try as many times as possible.
I told my wife about that doctor’s suggestion. On the fifth day all my symptoms disappeared. So Finasteride was my medication. We tried to have sex at least once every 10 to 15 days.
In March 2014 my wife and I went to New Zealand and Australia for 5 weeks. We were traveling from place to place and were tired. But managed to have a sex once after about 10 days and one more time about a week later. We returned back on April 28th and the pressure was building in my mind that I had not had sex for almost 3 weeks. That urologist’s suggestion was on my mind. I asked my wife about having sex the day we returned from a along journey. She declined and I was tired too.
But the next day while taking bath I masturbated. My mind was not in it. I barely got erection and when I ejaculated I experienced excruciating pain in my penis, groin, perineum, hip joints, supra pubic area.
I called that doctor’s office to make and appointment. His nurse came back and said, since you had pain when you ejaculated you have to see his partner and gave me the details of that partner. When I saw him he wondered why the first urologist suggested to ejaculate 2-3 time a week. This urologist ran tests on me and said, your symptoms are not urinary system related. You should see a physical therapist who has been trained in pelvic floor pain treatment. Since then I have seen 3-4 PTs, also went through 9 day protocol organized by one urologist and a psychologist in the northern part of California. My symptoms have not gone away. I feel like killing myself. These symptoms have brought me down they make me cry. I have no desire to live. Please help.
Author Stephanie Prendergast says:
We are sorry to hear of your trouble. If the first few providers/physical therapists were not able to help I suggest you seek another opinion with new providers with experience in this area. It would also be helpful to consult with a pain management physician. Please email us directly and tell us where you live and we will help you find someone to help.
Thanks,. I live in a remote area of the Himalayas, no access to PT clinic or therapist. Anything I can do on my own or with friend’s help.?
Many thanks for your most helpful analysis.
Hi Richard,
Unfortunately we cannot make recommendations without evaluating you.
Regards,
Admin
My name us Al and about a year ago I was in an auto accident and suffered a broken pelvis on my left side. I seemed to recover well and went back to work in 4 months. I suffer from spinal stenosis now with a lot of back pain. I had an MRI that determined that diagnosis. For the last 4 months I have suffered a progressive burning pain in my pelvis on the right side. I take 2400 to 3000 mg. Of ibuprofen a day to funtion. The symtoms Tony had sound a lit like mine. Every Doctor I see has a different diagnosis. Im so confused and don’t know where to turn. Can you help me?
Hi Al,
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 name is David and I m 40 years old; I live in Peru and i.think I suffer from this hard to understand by both patient and doctor condition . In addition , I take antidepressants and stimulants in high doses for my depression and ADD and they make this worse. I suffer from difficulty urinating nothing out of the ordinary until I started using prostate massage RS which I used wrong and damage that perineal area doctors ignore this they don’t see how the massager could harm me so badly but I m sure it did I m frustrated I went to 5 urologists to no avail
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
This sounds exactly like my story!
OMG!
I feel like I have a good lead now.
I have been in treatment by Stephanie, Katie for four months after nearly four years of constant rectal and testicular pain i am seeing major results. I was suicidal and was within a week of scheduling a double orchiectamy
After four months of treatment i have hope, days of very low pain levels and an downward trend in pain overall. I highly encourage men to seek out this treatment prior to surgeries and I wish I had found it years earlier. There is hope
, empower yourself and get yourself a team dedicated to the quality of life you deserve it. It works. You will get better. I lucky to be alive and I owe that to pelvic floor therapy and my PT’s
I am 57. I was diagnosed with prostatitis 27 years ago. This became a frequently recurring chronic condition, which was very often treated with antibiotics. Finally, a doctor said, the thing is, there is no evidence of a bacterial infection, so antibiotics won’t help. The symptoms that have been ALWAYS present since then: slower urine flow, dribbling post-urination, more frequent urgency, waking at night to urinate, and a dull ache in the perineum and urethra .The symptoms that are intermittent: sharp pain on the tip of the penis, significant urethral pain, delayed ejaculation, significant perineum pain. Over the years, these I kind of got used to this, and just toughed out the flare-ups. Two years ago, however, I started having some serious gastro symptoms. Abdominal pain, and cramping, irregularity, intenser urgency to have a bowel movement virtually always, regardless of how much I’ve gone that day. I have tried many doctors, nutritionists, and therapists, I’ve devoted myself to several different protocols, several different diets, and supplements, and feel about the same today as I did when this first began two years ago. There are better days and worse days, but I perceive little pattern to it. (I have kept a detailed food and symptom journal for most of the two years) It seems the condition runs its course regardless of what I do… And I have since developed more symptoms: hip pain, pins and needles on the skin throughout the pelvic region, lower abdomen, and lower back, and ever more delayed and slower urine stream…