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!" and "My Vestibulectomy".

I’m a great woman with a pissed-off vulva. I have “primary vestibulitis." Most people are uncomfortable discussing their genital pain in public. My hope is that my obsession to find help for myself will make your experience shorter, easier, and less painful. P.S. Recently "vestibulitis" has been renamed to "vestibulodynia."

UPDATE: Valium Again, but Suppository Form

Update January 30, 2014
Between the original post and this post, my doctor had me use compounded valium suppositories instead of putting a pill meant for oral ingestion into my vagina. The idea of using a valium suppository is that it allows the valium to be more available for absorption by the pelvic floor. I didn't notice any improvement, but there is research to support this idea and it is an "easy-try".

Had it worked, I the compounding pharmacist said he could "trick it out" with gabapentin and other meds.

I believe the oral wafer clonazepam .125 is working. I take it orally four times a day.

She also had recommended use of aspirin to reduce overall body inflammation (this was my hypothesis, not hers). I took one per day (read the safety data but for most people it is fine). But this time when I went in, I mentioned an alternate to the overall inflammation hypothesis: mast cells. I haven't written about or researched intensely mast cells yet. The basic idea here is that people with vestibulitis have increased neurons and mast cells in their vestibular area. I lifted this from a research abstract, "Mast cells are found resident in tissues throughout the body, particularly in association with structures such as blood vessels and nerves, and in proximity to surfaces that interface the external environment...After activation, mast cells may immediately extrude granule-associated mediators and generate lipid-derived substances that induce immediate allergic inflammation. Mast cell activation may also be followed by the synthesis of chemokines and cytokines. Cytokine and chemokine secretion, which occurs hours later, may contribute to chronic inflammation. Biological functions of mast cells appear to include a role in innate immunity, involvement in host defense mechanisms against parasitic infestations, immunomodulation of the immune system, and tissue repair and angiogenesis." What this is saying is that mast cells emit irritant chemicals during degranulation. And degranulation is encouraged by aspirin. So out with the aspirin. In with the Benadryl. 

Original post
I did a follow-up with my Stanford vulvar dermatologist Dr. Joanna Badger. No improvement to the vulvar pain since the last visit when she prescribed Triamcinolone Acetonide ointment 0.1% topically. She came up with the Valium idea on her own and so I am back on inserting Valium 3 times per day to see if that helps.

I am also to take oral disintegrating clonazepam .125 four times a day. The benefit of clonazepam is that it is a muscle relaxant and an anti-anxiety medication.

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