Health Organization for Pudendal Education

Many of the MRI's as well as surgical procedures have shown that the nerve has been compressed with scar tissue. What causes it? I know in some cases its obvious (ie., previous surgeries, injuries, etc.), but what if you fall into a category of none of the above? Any theories? For women, could it be endometriosis?

I would say definitely endometriosis(growth of endometrial tissue in areas of the pelvis outside the uterus),and possibly any infection in the pelvis, falls that you can't remember, pregnancy and childbearing. Although having said this, it does seem like PN would be more common.

I've always wondered if some people just have a stronger autoimmune process than others, ie a genetic variation. Some form keloid scars on the exterior skin, it makes sense that some could be scar-formers on the interior.

JeanieC - I think it would be interesting to have the doctor's do a biopsy of the scar tissue to see if it is endometrial tissue. I've never been "officially" diagnosed with endometriosis, but strongly suspect that I have it. I've never had a child, never had major abdominal surgery, I exercise (but I've never been a "heavy" weightlifter), never recall a bad fall or injury, never had a bad abdominal or gynecological infection (in fact have been with only one man, my hubby for the past 34 years). Even my husband was wondering how in the heck I got all "scarred" up.

Celeste - you may be on to something with the autoimmune connection. It's interesting because when I had my consult with Dr. Ansell, I asked him about scar tissue and if it was ever biopsied and he said he hardly ever sees scar tissue (maybe he meant he normally just sees entrapment by ligaments and not fibrosus.) Another interesting thing is that I see more frequently than I would anticipate in these threads quite a few people who also have autoimmune disorders like fibromyalgia.

Interesting that Dr Ansell rarely sees scar tissue and Dr Potter sees it often. I can see why it would puzzle you to be told you have scar tissue with no obvious cause. I do think that you could assume it may be from endometriosis but I am not a doctor.
I know there was not any mention at all of scar tissue in my surgery report and the surgical pathology report states "benign fibroadipose tissue, nerve and blood vessels" The fibrous tissue is ligament.

I know for a fact my PNE was caused by scar tissue, from my baby's head growing for 9 months on the same spot (my Alcock's canal) due to my uterine abnormality.

Pressure and/or injury can result in tissue breaking and causing new scar tissue to form, trapping nerves.

I too think it's interesting that Ansell said he doesn't really see a lot of scarring entrapping nerves.

Weird.

I think that what is inferred from a scan is probably very different from what is visualized when the person's body is actually open in surgery.

I'm a male sufferer. I now know I was misdiagnosed and in 2004 I was circumcised, unnecessarily in my opinion, but it has left me with further scarring on the internal side. This has increased my PN symptoms dramatically.

Dr potter found a lot of scar tissue. But is this a true finding or accidental?

Hi Manon,

I agree - the MRI might not tell all of the story, but it has to be correlated with pain. In my case, It does correlate.

I've had Bartholin cysts, too, but it was quite some time ago, and had no relation to my PN. It actually resolved on it's own, I didn't have it excised.

Re: sitting causing scar tissue - I think we would really have to look at an asymptomatic population and a symptomatic population and compare MRI's. Think about the number of people who sit 8 or 10 or more hours on their job for years (or athletics, or vaginal deliveries, or hysterectomies, etc.) but never get PN. Something is missing from the picture...

I do think there is some mystery inciting incident that for some reason winds us up here, where many asymptomatic people never do. I'll never forget one of the docs I went to - I asked him if there were ever PNMLT studies done on normal subjects (pain free subjects) - his comment was "why would they ever do it". Makes you think.