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