Edit: I WAS CURED AFTER 22 YEARS! I had a vestibulectomy Dec. 2016. The recovery was easier for me than having sex ever was. It took about 5 weeks. I have included my recovery photos. Look for the blogpost "I'm Cured!"
I’m a great woman with a pissed-off vulva. I have “primary vestibulitis." Most people are uncomfortable discussing their genital pain in public. Well, I’m not…so, welcome to my blog! There aren’t definitive answers in medical literature to explain the pain cycle of pelvic pain and how to heal it - yet. My hope is that my 21-year obsession to find help for myself will make your experience shorter, easier, and less painful. P.S. Recently "vestibulitis" has been renamed to "vestibulodynia."
My Pain Doctor Disappoints - A Summary of Pain Meds
She did a review for me of the meds I have been on and all the classes of drugs available for pain:
Tizanadine, Neurontin, Topomax, Lyrica - central nervous system operators
NSAIDS, specifically Sulindac - anti-inflammatory
Narcotics - well, you know what these are. She says they don't work for chronic pain and lead to habituation so you need more drug to get the same amount of pain relief over time.
She doesn't know about Lamictal, Tegretol, and Trilecta in that she hasn't used them before - anti-seizure drugs. I am going to explore this with a new doctor as I already take Lamictal for mood stabilization under the direction of my psychiatrist.
With strong pressure by me, she came up with taking more Tizanadine on a flare day, but it made me sleepy, taking Neurontin on a flare day (supposedly will make me mildly sleepy and chillin' - haven't tried), Topomax (supposedly will make me stupid and tired), or Lyrica (didn't write down the side effects).
With even more persistence on my part, she came up with applying 5% Lidocaine cream 3xday to an area the size of a tennis ball at most. I have tried this once so far and it may have worked.
I suggested a TENS unit and she recommended the EMS2000 two times a day for 15 minutes.
I really felt positive about my care under her. And now I don't.