WELCOME

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."

Good Outcome: Stanford Vulvar Dermatologist Visit

I had been dreading seeing a dismissive dermatological gynecologist I thought I had already seen a few years ago, but NO! Dr. Joanna Badger (now referred to in my household as "Mary Poppins") is a vulvar dermatologist. And most kind.

My current treatment plan with her is to up the amount of Pristique (a SNRI I was already on) from 250mg to 300mg (my dosage I was on originally was pretty high). I then had to abandon all my creams, ointments, boric acid suppositories, and even my fluconazole (!) for the duration of this trial so as not to have too many confounding factors in play. She mentioned that she could have gone the tricyclic route instead of the SNRI, but I have been on a tricyclic before (awful) and am on Pristique already (convenient). She worked the dosage out with my psychiatrist.

I noticed an immediate and consistent drop in pain. This has made the biggest difference to me thus far in my 16 years of treatment. 

I returned to her a few weeks ago with the results that the pain had dropped significantly, but was not gone. She again worked with my psychiatrist and right now I am at 350mg with the expectation of going to 400mg. All of this depends on how I "tolerate" that high level of medication. FDA approval is to 400mg.

To summarize: 250mg took care of my psychiatric stuff; 300mg took maybe even better care of my psychiatric stuff and lowered my pain, but my eyes and throat are dry; and I haven't noticed any improvement at 350mg in my head or vulva, but still have dry eyes and throat. I will go up to 400mg this week although I doubt there will be improvement (prove me wrong gods, prove me wrong!). I will likely return to 300mg.

Something interesting here is that I was super-freaked that I had yeast infections as soon as she said I should get off Diflucan. She asked me my symptoms and said that just smelling the smell of bread with some white discharge did not constitute a yeast infection and I need to mellow out.




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