Amanda (humascot97) wrote in vaginapagina,

Experience with surgery treating vulvar vestibulitis

10 years ago, I was diagnosed by Dr. Goldstein at the Center for Vulvovaginal Disorders in Washington, DC as having vulvar vestibulitis. I had an appointment with him today at his NYC office and he updated my diagnosis to congenital neuronal proliferation vulvodynia, or too many nerves in the vestibular area. The only cure for this is vulvar vestibulectomy with vaginal advancement, which, if I decide to do it, will cost about $12K out of pocket (Dr. Goldstein does not participate in any insurance plans). Has anyone here had this surgery? If so, what types of side effects, if any, have you experienced? How long after the surgery were you able to resume your normal sex life? Was the sex entirely pain-free or was there still some pain with penetration? I would really like to know in as much detail as you're willing to share, either in comments or via PM. Your help is very much appreciated.

EDIT: Thanks to everyone for their input. To clarify, I have seen 3 other gyn's and 2 psychotherapists since my initial diagnosis and have attempted to treat the issue with the following:
Lidocaine 2% gel/as needed
Lidocaine 5% gel/as needed
Elavil 50mg/d
Atarax 50mg/d
Vaginal dilators
I have also had a biopsy done for lichens sclerosis, which came back negative.

My husband told me to not worry about the expense of the surgery, but to figure out if this is an avenue I want to pursue.

During the exam, which my husband attended, we were able to see a very clear definition on the labia minora between the area with normal amount of nerve endings and the area that is over-saturated with them.

Dr. Goldstein does not participate in any insurance plans as a matter of course, and did not 10 years ago. I am only 36 hours out from the updated diagnosis and treatment recommendation, so I'm still doing research, including trying to track down other doctors in the NYC area that are able to perform this surgery. I will also be trying capsaicin this weekend as well. Please continue to share your advice, either by commenting or in a PM.
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