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."

Predictors of Vestibulitis

What makes developing vestibulitis more likely?

The journal article "Medical and Physical Predictors of Localized Provoked Vulvodynia" by Nina Bohm-Starke discusses predictors of localized provoked vulvodynia, a.k.a. vestibulitis).
http://onlinelibrary.wiley.com/doi/10.3109/00016349.2010.528368/abstract;jsessionid=4E60EAF10EE04E4F1BC811DD8028FBF5.f01t04

Localized = in the vestibule rather than the vulva as a whole
Provoked = the pain is associated with penetration (by a tampon, or penis, or...)

Predictors:
  • trauma to the vestibular mucosa develops greater pain sensitization in the peripheral and central nervous system (I discuss this in my "Pain is a Loop" post);
  • greater pain perception
  • proliferation of mast cells in the vestibule
  • pelvic floor muscle dysfunction
  • concurrent bodily pain in other areas of the body
  • history of hives (2.5 times more likely)
  • bacterial vaginosis*
  • genetics - allele 2 of the IL-1beta gene in 40% of women versus 25% control; reduced capacity of TNF-alpha production in response to microbes with polymorphism of the mannose-binding lectin gene; fair skinned women; and when there is polymorphism of the melanocortin-1 receptor (MCIR) gene
  • hormones (read article for greater depth), with birth control thought to be a significant precursor according to Andrew Goldstein. 
*Although bacterial vaginosis is a predictor, human papillomavirus (HPV) and herpes simplex are not. Yeast infections are probably not a predictor, the article says. Studies that have been done on vestibulitis and yeast infections have all used "self-report" rather than judged by a clinician which undermines those studies.

This is written in 2010, and, as the author states, there were not enough high quality studies to review so these predictors are hypotheses, but have not been repeatedly confirmed.