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."

Research: Treatment and Relationship to Autoimmunity

I found this on the web. I will be looking into the treatments. It is a small study, but immune modifying drugs were successful (how do they define success?) in 97% of the patients. The second drug mentioned, Hydroxychloroquine (Plaquenil is the brand name), I already take for arthritis. I will see my doctor about trying the with the intravaginal hydrocortisone acetate 10% foam.

 2005 Jul;50(7):513-23.

Chronic inflammation of the vagina: treatment and relationship to autoimmunity.


National Women's Hospital, Auckland, New Zealand. jthomson@world-net.co.nz



To investigate noninfective, symptomatic, chronic inflammation (CI) of the vaginal mucosa to determine its prevalence and immunologic basis and to initiate an immunologic approach to treatment and assess the response.


A prospective, observational, clinical study of 55 women with dyspareunia and/or discharge of vaginal mucosal origin. Vaginal biopsies and immune investigations were carried out. Treatment was instituted utilizing immune-modifying agents.


The prevalence of CI of the vagina in symptom-free women was 0-4.3% and in the symptomatic group, 89%. Systemic immune activation was demonstrated in 43 of the 55, with 21 suffering from an autoimmune disease or a condition in which immune activation plays a part, including endometriosis in 20. Thirty-one were treated; intravaginal hydrocortisone acetate 10% foam was given in 24, giving full relief in 14 and inadequate relief in 10. Hydroxychloroquine, an immune-modifying, antirheumatic drug, was added and largely gave relief in these 10. Hydroxychloroquine alone was given in 4 and was effective in 3. Overall, immune-modifying drugs were successful in 97%.


CI of the vaginal mucosa stems from local immune activation and is generally associated with evidence of other immune abnormalities, including autoimmune diseases and disorders in which immune activation play a part, including endometriosis. It can be successfully treated by immune modification.

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