I've been doing a lot of background work on this website lately, figuring out how to grow it, brainstorming, making plans, figuring out what needs to get done and in what order. During that process I realized that there was one thing I really wanted and needed to change. A small, subtle detail that would have large repercussions about how I proceed.
Today I made that one small change, and you probably didn't even notice it. The subtitle of this website is now "Support & Sisterhood for Women with V Pain" instead of "Support & Sisterhood for Women with Pelvic Pain."
Why the change?
A number of reasons, the main one being that the female pelvis has so much going on that I couldn't adequately cover all of the pain disorders contained therein.
Unfortunately, none of these issues are given the attention they need: endometriosis, fibroids, interstitial cystitis - the list goes on.
But those illnesses are not part of my personal experience, and I came to realize that despite my good intentions I wasn't doing them justice.
And frankly, as overlooked as those issues are, they get way more attention than vulvar and vaginal pain disorders. "Fibroids" is something women have heard of; "vulvodynia," "vestibulodynia," "lichen sclerosus," "clitorodynia,"...no one's heard of those.
Vulvar and vaginal pain are so under-researched that "clitorodynia" isn't even the name of a specific disease. It literally means "pain in the clitoris" and there are at least 11 different causes.
The crazy thing about all this is that studies show that chronic vulvar pain affects somewhere between 6% and 28% percent of the female population at some point in their lives. That's more than breast cancer (12%), diabetes (9.3% of Americans, not just females,) or heart disease (43 million women, about 7% of American women.)
V pain is not some little thing that affects .000001% of the population. Even the widely varying data we have on its prevalence indicates that V pain is a mainstream health issue - and yet it is completely ignored by mainstream medicine and mainstream media.
Out of solidarity with our pelvic pain sisters, and in recognition that many of us are in the multiple-diagnosis camp, I will continue to have a variety of pelvic pain resources on the Resources page.
But the intention of this site has shifted, and I believe for the better.