Has anyone considered or had surgery (e.g. vestibulectomy)?

Hello all. I am thankful that this forum exists. I've been a lurker for a few months, but I feel far less alone knowing I'm not the only one going through all of these symptoms!

My Vulvodynia symptoms started almost six years ago when I was 25, out of no where. For the first two years, gynos and other doctors made it seem like it's all in my head, that I was frigid (one gyno told me I should go out and get drunk before the next time I had sex!), that I should go see a sex therapist (who ended up amplifying the message that it was in my head, etc). I was finally diagnosed by a colleague of Andrew Goldstein--I cried when she told me what I was feeling was real and that she knew what it was. My hormones were out of whack because of hormonal birth control pills, which I stopped immediately (first signs of relief immediately followed), and applied a compounded estrogen/testosterone cream she prescribed. I started to feel better after about six months.

But two years ago, it all started getting worse again. I couldn't afford Goldstein's office because they don't accept insurance, so I started seeing Kamal Hamod at Johns Hopkins this past January. In these last 9 months, he's had me on gabapentin 6% cream, low-oxalate diet/calcium citrate, elavil, and sitz baths. I've also had a pudendal nerve block. Relief at first but then not. I've also been doing physical therapy at Georgetown since July--I can feel it benefiting my internal tightness (which was compounded by muscle pain issues in my hips, legs, and lower back), and want to continue the external work. The internal work (massage and dialators), has been difficult, primarily because the lube burns me externally. Sure enough, my vestibular area has been tearing again.

I've shared all of this because Hamod is now recommending surgery--a vestibulectomy. I go back next month to discuss. I've read the varying success rates (which seem to be affected significantly by age of patient?), but I'd like to communicate with women who have considered this option, how it went if they chose to have it, or why they chose to decline it.

I see no hope for improving my external problems of tearing and burning. The burning has in the past month and a half been traveling "up" my vulvar area to my clitoris, which scares me. I feel like I'm willing to try anything at this point.

Thanks for reading.

I think most of the ladies on here have generalised V which rules out surgery as an option. Also lots of us are from the UK and it's not easy to get surgery of that kind here. Try looking on www.vulvarvestibulitisrelief.com and go through the case studies, VVS is the ony type of V suitable for surgery so there might be some women on there who could help you.