Health Organization for Pudendal Education

Hi everyone, I feel it might be helpful to share a little bit of my history here. Every women's PN and journey is different yet similar:

When my symptoms started I was an OB/GYN nurse practitioner/midwife. The symptoms were not subtle! It started with burning pain-in the sacral hollow where the pudendal nerve originates; unfortunately it felt like the upper third of my vagina was on fire. This confusion took years to completely clear up.. until a truly trained, skilled examiner, palpated up behind the cervix along the tailbone and beyond. That occurred off and on for a year or so at which point the pain shifted to the L pelvis and super painful electric shocks traveled down the length of the pudendal nerve. I also started having PGAD, I didn't run to the doctor right away due to embarrassment. So I got out my old anatomy books and concluded (wasn't hard) that the pain was along the pudendal nerve. I had never heard of pudendal neuralgia so I searched on the internet for "pain in the pudendal nerve".

I didn't find anything about pudendal neuralgia like we have today. But I did find an interesting letter from a women with PN describing her symptoms and relating the problems she had with no one believing her and doctors telling her it was psychiatric. She mentioned the terms PN and PNE and that she was going to France for surgery. My first thought was.. "well, I am an OB/GYN NP, surely the doctors will listen and believe me". I was wrong, still waiting 20 years later to be fully heard. Where ever that women is... I owe her much... her story was a beacon of sanity, that I returned to many times. Likewise, this site may be a beacon of sanity for others... so hold on and don't give up.. don't ever give up.

PN Veteran, I just went back and re-read your initial post in addition to this one and my heart breaks for you, you have been through so much. Our stories are somewhat different but with some similarities. It does help to connect with others who have been through some of the same things. I was also told to see a psychiatrist by my neurologist. I did get some support from a sex therapist who was very kind but as I recall, the psychiatrist she worked with suggested that my problem was psychological. Of course, you can't help but be affected psychologically but something as dreadful as PGAD, but that doesn't mean the problem originates in your brain and that there is no physical damage, compression, or injury to the pudendal nerve. When a pelvic floor PT suggested PN, I went home and read about PN and PNE and I knew immediately that was what I had.

I don't know what treatments you've tried or if you have had a chance to get an opinion from any of the physicians who specifically treat pudendal neuralgia. I will be forever grateful to all of the PN physicians for being willing to treat patients like us. It's been 22 years since I went to France for surgery, and sometimes I can hardly believe I went clear across the ocean to a doctor I knew very little about, for a surgery I had no guarantees would help, but that doctor saved my life. I am very grateful to the people who ran the tipna.org forum and the pudendal.info forum back then, and to the people who posted their experiences and shared information that helped me to get the right treatment. I still remember the name of the woman who posted about Dr. Bautrant on one of those forums. Without her, I would never have known to go to him. So, thank you, PN Veteran, for posting your experiences here too. You may never know who you are helping, but your fighting spirit gives other people hope.

Violet

Yes, many thanks PN Veteran. Your story is heartbreaking. But our shared stories are tremendously helpful. And many thanks to you too, Violet. As you know, this site has always been incredibly helpful to me, but it was especially helpful in the early days, when your pn origin story (weightlifting and exercise) helped me self diagnosis. It helped me realize that my intensive step machine workouts were the cause of my pain. So, many thanks to you both for your shared stories. Different but similar.

April