CPPS Success Story - 39 y/o male

Cliff Notes:
-I've had chronic pelvic pain for 15+ years
-I've tried many medications and procedures and none have worked except myofascial/trigger-point physical therapy
-It took almost a year and now monthly PT visits, but my quality of life has improved significantly with pain dropping from 6-8 out of 10 to 2-4 out of 10


My advice on what to do:
-Confirm with your physician that you don't have an intrinsic and/or acute issue in an organ in the area (e.g. prostate, bladder, etc.)
-If there is no obvious infection or anything else your physician can identify then seek a licensed and experienced pelvic floor myofascial physical therapist - ideally in your area

• I swear by Melissa Hines who is in private practice in Boston - http://www.wellesthealth.com/melissa-hines-pt-dpt/ (About Us)
• She used to work at https://www.pelvicpainrehab.com/ (Pelvic Pain Physical Therapy - Male & Female Pelvic Pain) which has multiple US locations
• If you're on the west coast I would suggest reaching out to Dr. Wise who wrote "The Headache in Pelvis"

-I would discourage you from leveraging a PT that focuses primarily on "bio-feedback" as this will likely fail (it did for me)
-My PT required a multi-pronged approach outside our visits that included restorative yoga, mindfulness meditation and stretching. The yoga/meditation is critical to help stop the mental components of the "pain cycle"



Long version:
In my last year or two in college around the year 2000 I started to notice pain in my pelvis. My symptoms were and remain primarily in my perineum (though much better now). I saw a primary care physician who assumed a prostate infection and prescribed multiple courses of antibiotics that were not effective. This is a common first-line treatment that fails most of the time because infections are not typically the cause.

He then referred me to a urologist that did an ultrasound of my bladder and ordered a CAT scan (or MRI, I forget). Both were normal so he suggested the drug Flomax. I took this medication for a year or two but never found relief. OTC medications like ibuprofen never touched it either. As the pain varied over the years, in some years I was more active in seeking treatment.

A few years after the pain began I found this NYC Dr. Toth (a fertility doctor) that believed that CPPS in men was caused by bacteria in the prostate that oral antibiotics could not treat due to dilution. His procedure included IV antibiotics for a few days and a few direct injections of antibiotics into the prostate. As you can imagine this was an incredibly uncomfortable procedure and required regular travel between Boston (my home) and NYC. Thankfully I was able to convince my health insurance provider to cover it or it would have been several thousand dollars. It didn't work.

Some time after that failed procedure, I sought out another urologist in Boston at a prestegious local hospital. The urologist also found nothing wrong with my prostate and recommended the medication called Neurontin (gabapentin). This is an drug sometimes used for neuropathic pain. Unfortunately, the side-effects (tiredness/difficulty concentrating) outweighed the limited benefits so I didn't take it for very long.

Again years passed and I had another bad "flare up." I did my usual search online to try to find new treatments/hope and found a story about a guy that found relief through a multi-disciplinary approach at a local Boston hospital. I forget the details, but it included a pain doctor, physical therapist, urologist, etc. Armed with this I went to the local "Women's Health" clinic of the same local prestigious hospital. The physical therapist I worked with was compassionate, but focused primarily on biofeedback. Specifically trying to "re-train" my pelvic floor. After seeing no improvement in 4-5 visits, she suggested that I go to the pain clinic to see a specialist there.

In retrospect at the time (circa 2010 maybe), I wondered why I never went to a pain specialist before. The specialist was also very compassionate and committed to try to help. She suggested I try valium suppositories. This was the only medication that ever provided some relief for me and in retrospect now, I understand why (due to relaxing pelvic floor tension). It obviously had some undesirable side-effects that I didn't like including drowsiness/difficulty focusing. This was problematic working in a mid-level position at a healthcare tech company and having hobbies like racing cars. She also tried some direct nerve blocks in my lower back that failed and a relatively new procedure of a "lidocaine infusion" that also didn't help. At that point she was out of ideas.

A couple of years passed with using the valium to help manage the pain when I again went online to search for a solution and at that time I found https://www.pelvicpainrehab.com/ (Pelvic Pain Physical Therapy - Male & Female Pelvic Pain) and Melissa Hines. Melissa has since opened a private practice: http://www.wellesthealth.com/melissa-hines-pt-dpt/ (About Us) To set the right expectations, she did not "cure' my pelvic pain, but significantly reduced it and helped me understand the causes and how to manage it together.

Her approach includes education on the latest understanding of the pelvic floor and how the mind deals with pain. This is why her treatment includes not only internal/external trigger point release (as described by Dr. Wise in his book called "A Headache in the Pelvis"), but also restorative yoga, mindfulness meditation and stretching. She was cautiously optimistic from the beginning and said it would take months to help address the pelvic floor dysfunction I had developed over the years. With our mutual commitment, I saw slow progress and within a year was significantly better and now meet with her once or twice a month for "maintenance."

I didn't mention this before, but the likely trigger to my pelvic pain was a lower back injury I had from a fall in College (that I didn't connect at the time) and a predisposition to hold my stress/anxiety in my pelvis. What happens is that tension builds in the pelvic floor over time creating "trigger points" (kind of like knots in your neck) where poor blood flow/tension creates an inhospitable place for the surrounding nerves. The nerves send pain signals to your brain and over time creates more pain receptors because your body thinks something may be wrong. This in turn creates more pain and the cycle continues. This is why the mindfulness/yoga is important to help "reset" the brain as the tension and trigger points in the pelvic floor area is addressed.

I'm probably forgetting some details here and there and may not be consistent in answering questions. It took me over a year for me to even come back here to try to share my story.

Good luck to those dealing with this and hope this helps.

 

I need to find a physical therapist who can do myofascial pain release and visceral manipulation. My pelvic pain is entirely due to scar tissue that has developed since I had a C-section, hysterectomy, and bladder repair surgery 20 years ago. I know that I had adhesions, because I’ve already had one surgery to remove them 19 years ago. However, it was getting pretty bad to where I was getting pelvic pain on a daily basis, as well as IBS. TMS definitely is using it as a way to distract me, that is for sure. I am trying to find a physical therapist in Utah that could help me with it, but so far have not had any luck. In the past, I have just gone to my chiropractor who has done a quick manipulation on me, but which never really sticks.

I’m glad you’re getting relief from your pelvic pain. Hopefully, I can do the same one day.

 

@Jules - I would encourage you to reach out to Melissa at Wellest as she regularly attends myofascial and other seminars around the country and may know of someone in your area. Good luck!

 

armyofone:
I congratulate you for your success and I am glad that more and more CPPS patients finally come forward.

A word of caution: I had more than 100 sessions of physical therapy including approx. 40 sessions with pelvic pain rehab (that you recommend). It didn't do squat for my pain.

I think one should try physical therapy of course and if it works that's great. But based on my involvement as an ex-mod of a pudendal forum, your experience is atypical.

 

I had surgery to remove dense adhesions. Apparently everything was 'glued together' (after a c-sections previously and other surgery). The removal of all of these adhesions did absolutely nothing for my pain. A subsequent surgery showed they had not regrown. Lots of people have adhesions and no pain...

 

totally agree with ezer on this one, a CPPS patient should give the PT a try - but I am not aware of any case that had a lasting relief from those (minus one guy who said a chiropractor cured him) .. at best it was more of a pain management for the majority. For me personally it worsened my symptoms as the woman said i had terribly tight muscles around my coccyx. Guess what ? for an entire fking year I got coccyx pain on and off - before i discovered ezer, sarno, this site etc. Never had that pain before the PT.