Health Organization for Pudendal Education

Nick wrote:
As far as the why part goes that is very tricky... He did say that because I get better and only have pain some of the time he doesn't think I have a true entrapment but rather something keeps irritating the nerve. Once again though I can't stress enough that I am still very early in this diagnosis and finding the cause of the PN looks like half the battle.

I am going to have to disagree with this as in my case, when this first started, I had pain levels varying from 1 to 10 (right before surgery) and I do believe that if your nerve is truly entrapped, that doesn't mean at the MOMENT it becomes entrapped, you're automatically always at high pain levels. I pray in your case Dr. Antolak is true, but I would go with your gut instinct and don't waste too much time on conservative treatments if you are reaping little to no benefit.

Always the best,

AM

PNE is not an exclusive diagnosis...there are many possible causes of pelvic pain and it is very possible to have inflammation of the nerve with no entrapment. I have had pelvic pain for 5 years that remits and relapses....I can go months and months with zero symptoms (I mean absolutely no symptoms). It would seem odd that Nick's pelvic pain can disappear for 10-14 months at a time (I believe that is what he quoted) and yet he has an entrapment to the degree that many people here suffer....it could very well be that he has some systemic issue that causes inflammation that comes and goes with no entrapment. I'm not totally discounting that he could have an entrapment but there is a bit of a difference between having low pain levels and have NO pain what-so-ever which seems to be Nick's experience.

sgrandy,

You do have a good point. I just hate seeing people suffer years and years with undiagnosed Pudendal Nerve Entrapment when they really needed surgery all along.

It is my sincere hope that Nick does not have PNE.

Sincere Regards,

A's Mommy

A's Mommy: Thank you so much for your advice and kind wishes. My way of thinking right now is that I need to go conservative as much as possible because even though I have bad pain sometimes I can still sit (using a pad to help prevent further nerve damage), work, do my own chores, etc. and surgery at the very least would put that on hold during the recovery period. I understand where you're coming from though, and I wish there was a better way to distinguish between entrapments and other neuropathies. As it is I only have my symptoms to guide me and help decide treatment. And I won't lie, I'm apprehensive about the injections and the idea of surgery plain scares the hell out of me. It's a tough decision to make and I'm just praying to God that I'll make the right one when the time comes.

Stephanie: You got it right. In spite of dealing with this for 8 years I have been very lucky to lead a normal, pain and symptom free lifestyle about 80% of the time. Although I'm still dealing with the flare-up from last Oct. making this the 2nd worst epidsode I've had so far.

I hope I can pinpoint the cause of the pain and manage it. Seems like most people can attribute their pain to certain activities, eg sitting, biking, etc. but mine just seems to come and go as it pleases. Have found that stress can bring a flare on or make it worse, but not always. Nothing seems to relax things like a nice cold beer or two though, I'll drink to the health and recovery of everyone here the next time I have one

Regards,

Nick

Nick wrote:Nothing seems to relax things like a nice cold beer or two though, I'll drink to the health and recovery of everyone here the next time I have one

Me, too! Cheers!!!!