Health Organization for Pudendal Education

Many of us can relate to all tests coming back normal but still having pain. I am sure you have tried to explain PN to the doctors, but maybe this spine specialist will listen. Can you call your insurance company and find out about any PT benefits? Maybe just having the initial PT evaluation will give you some useful information.

Sincerely,
Stephanies

Why is it that there are so few Doctors that treat PN?? I apologize for sounding skeptical, but the last thing I want is to go to a doctor capitalizing on people's desperation. From everything I've read, surgery is in no way a guarantee. Do you guys know of anyone who's recovered from this?

I do know of people who have recovered via pudendal nerve decompression surgery. However I think that PNE is overdiagnosed and that many of the failed surgeries are due to misdiagnosing PN from sources other than entrapment, and generalized pelvic pain from other sources, as PNE. I am someone with a history of PN but NOT PNE who is recovering quite nicely; but pudendal nerve decompression surgery would have been useless / damaging to me since the nerve was not entrapped...and i do believe if i had run straight to one of the PN surgeons I probably would have been considered a surgical candidate and undergone unnecessary surgery. Do your homework and make sure every cause for PN / pelvic pain aside from entrapment is ruled out first before even considering PN decompression surgery. As i have repeated several times, you are having more global neurologic symptoms than somebody would have with PNE alone. This is a red flag against seeing a PN specialist before getting a more complete general neuro work-up.

Lucky,

Having been in the PN world for 10 years now, I know many people who have recovered and gotten their lives back. I was one of them for 6 years and I plan to be one again.

Wishing you better days,
Stephanies

HerMajesty,

I saw 4 pudendal experts before deciding to have surgery in 2006 - Dr. Bautrant, Dr. Marvel, Dr. Campbell, and Dr Filler. They were evenly split, 2 thought it was likely I had an entrapment causing pain and 2 thought that it was not entrapment but nerve irritation or injury. In hindsight, I now believe my issue was piriformis syndrome and I recovered so well due to focused PT and massage ball work on my piriformis muscles post op rather than the surgery itself. I started this again 2 weeks ago - piriformis work only - with some light stretching of hamstrings, and I believe that I am already seeing improvements. Hopefully I can use my past experience to figure out my pain this time around and have my second success story! I think all the imaging is contributing to the rush to surgery. Just because an MRI /MRN inducates there may be "entrapments" does not mean these entrapments are what is causing the pain. In short, I agree with your post.

Stephanies

Ok, so I've found a physical therapist who claims to treat PN/PNE. What exactly should I expect? Also, would she be able to tell the difference between PN/PNE?


After basically ruling out any neurological issues, I find myself starting from scratch again. Could it be that I just have non-bacterial prostatitis, or are my symptoms more linked to the pudendal nerve? Have any of you had any success with home remedies? I will do almost anything to curtail the frequent urination...it's really ruining my life.


Oh, and what should my next step be if PT doesn't prove to be effective? Should I then consult one of the specialists provided?



Thank you all for you tremendous help!

Lucky,

I have success with treating frequency with a low dose tricyclic anti depressant (doxepin 25 mg.) and at another point I used Detrol.

Stephanies

Totally forgot to mention! Should I stop weightlifting?


I typically lift heavy weights 5 times a week and sprint twice a week. Do these exercises aggravate the situation?






thanks!

There is an entire thread on weight lifting and PN - you should be able to find it if you search "weight lifting" on the forum. Some of our members, including I believe Violet, attribute their PN issue directly to weight lifting.
I got huge help from PT for urinary issues (less so for neuropathy). The things that helped the most were trigger point deep tissue massage belly-button-to-knees but especially abdomen and thighs, core strengthening excercises especially transverse abdominals, and manual correction of SIJD (misaligned pelvis).
Some PT's like to do "internal work" on trigger points, in the male that access would be through the rectum, and I found that to be less useful. It is also no fun so only allow it more than once if it helps the 1st time. This is true of PT in general: some PT's like to say, "you will feel worse before you feel better", but I have not observed this to be the case. What I have observed is that some people, ESPECIALLY those with a true entrapment, will flare from PT and just suffer as long as they stick with it. Many of us such as myself (and maybe Stephanie from her description) who DO NOT have entrapments will start benefitting from PT very quickly.
The PT will not be able to definitively diagnose PN or PNE. They will be able to tell you if you have pelvic floor dysfunction, which is short, tight, spastic pelvic muscles which might be causing your symptoms, or might be caused by your symptoms (that is, constant muscle tension due to pelvic discomfort could have caused it). Treating pelvic floor dysfunction might help your symptoms.
I think the prostatitis diagnosis is a junk diagnosis for doctors who do not understand chronic pelvic pain disorders.

Lucky, you may find this article by the Nantes team helpful. http://www.pudendalhope.info/sites/defa ... iteria.pdf
This is an article that lists the symptoms for pudendal neuralgia caused by pudendal nerve entrapment (PNE). (There can be other causes of pudendal neuralgia besides PNE).

In that article it says that exquisite pain on palpation at the ischial spine (which is typically done by a practitioner pressing with their finger via the rectum in men, via the vagina in women) is one of the the complementary criteria for a diagnosis of pudendal neuralgia by pudendal nerve entrapment. This is something that can be done by a practitioner who knows the pelvic floor well and was how I was diagnosed with pudendal neuralgia by a pelvic floor PT. I noticed that you said you did not have pain on palpation of the nerve via the pelvic floor which means you do not meet this particular criteria for pudendal nerve entrapment. Do you know if they pressed at the ischial spine and along the course of the alcock's canal which is where the pudendal nerve runs between the obturator internus muscle and the levator ani muscle? I had exquisite pain along the course of the nerve when pressed so in that regard your symptoms are different than mine.

The article does discuss urinary frequency as being associated with pudendal neuralgia. This was a major symptom in my case but it wasn't just frequency, it was a feeling of never being empty. My symptoms began 2 months after starting a weightlifting program called Body for Life so I have no doubt that weightlifting is what triggered my problems. Unfortunately I didn't realize that weightlifting was what was causing it so I continued to lift weights but eventually my ligaments became chronically strained and pelvis became unstable causing problems with SI joint dysfunction, pelvic misalignment, piriformis syndrome including weak leg on right side, numbness in my right foot with inability to balance and put weight on that leg. I also developed a limp on that side because the leg was weak.

Pudendal neuralgia often occurs in conjunction with musculoskeletal problems. It can also be associated with a radiculopathy (in the spine rather than the peripheral nerve) as Dr. Bautrant mentions in his article. http://www.pudendalhope.info/sites/defa ... utrant.pdf He rejected 12 patients in his study because of this. It can be a real trick figuring out where the problem originates from and it takes a lot of research on the part of the patient and may require getting opinions from numerous practitioners. It's not easy but I do hope you can figure out what is going on in your case. I don't know if any of this info helps you. Just throwing out some things for you to consider.

Violet