Health Organization for Pudendal Education

Good Morning everyone, I have suffered with sitting pain for over 4 years now....I am not sure how I got PN, but it may just have been prolonged sitting for hours on end on Computer. I sure wish I knew then what I know now, and I would have gotten up so much sooner, but live and learn. I have searched for answers off and on for the whole 4 years, but as I researched my kind of pain, I just never could find anything with my kind of Sit Symptoms. I went to a few Dr's over the years when the Pain and Burning got unbearable, like GYN and Urologist, and they didn't find any reason for my pain and I surely didn't know how to word it very well. It s just not something you talk about freely with just anyone. About 3 months ago I changed GP's to a woman Dr that I really liked and so I openly shared my symptoms with her and went back 2 or 3 times. I finally one day was researching and came upon Pudendal Nerve Entrapment and WOW! There were my EXACT SYMPTOMS! I copied the info and took the papers and went back to my Dr who agreed with me about the diagnosis. She referred me to a Neurologist. I went to see her and she agreed and immediately sent me over the same day to a Pelvic Floor PT. And she gave me a referral to go to Duke Durham...to a Urogynecologist, so I thought finally I can get some good help..My PT said after eval that I was a very bad case and it was going to take time. She even went to my first appt at Duke with me...Well, boy was I let down...she didn't do any testing and told me it was a Muscle Spasm and told me to go home and go to a Counselor and Psychiatrist. After that I came home and was on the FB support group and found out that Duke doesn't recognize PNE...... I posted about my experience in the forum and got some good advise....and also found out that there is a PNE Doctor in Wake Forest. So here I go again today waiting for the office to open so I can call and make an appt with him.....I really find it hard to understand with all the advances in Medicine that so few Dr's diagnose and treat PNE. Would someone please help me to understand this....I know that no one knows everything, but this is such a debilitating disease, how could this happen....Trying to understand.....Thanks to everyone here for any help and insite you can give me.....

Welcome and sorry to hear you are getting a run around. I hope the Wakr Forest Dr can help. As for why we have a lack of resources for PNE it seems anyone's guess. I sometimes wonder if it is so big a territory that the nerve crosses many specialty areas except the it falls most definitely in neurology and they have not fully embraced it? The Gynecologist have been more prominent in helping but they are now more limited in support to men. There was a note that one gyne PNE was teaching a neurologist the surgery so maybe more hope for the future. It is really hard to diagnose until maybe they have you open in surgery! Good luck to you.
Janet

Miss Carol, I understand the frustration. I was also told to go see a psychiatrist and went through a number of docs before a PT finally figured out I had pudendal neuralgia. I wish I had a good explanation for why so many docs don't know about or treat PN.

I would be interested to hear how your appointment with the Wake Forest doc goes.

Best,

Violet