What's Ailing 13 Million American Vaginas?

Although the medical community is directing more attention and research funding to understanding and spotting the chronic condition, a knowledge gap still clearly exists.
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Don't let the title of this post fool you. I'm not about to trot out statistics on female sexual dysfunction, nor is this an HPV refresher course. And although the female body -- particularly the region between the belly button and the knees -- already has been scrutinized and pathologized to the point that only until recently was our biological sex considered a preexisting condition, the issue I'm addressing deserves far more public awareness and discussion. That's because the answer to what's ailing an estimated 13 million American vaginas is something many doctors are still unaware of: vulvodynia.

Vulvodynia's hazy definition is indicative of the medical murkiness it entails. According to the National Vulvodynia Association, it's a condition marked by "chronic vulvar pain without an identifiable cause." To get an idea of what that means, imagine getting a charley horse... in the vagina. Then double or triple that discomfort, and you're probably in the ballpark. And although sexual contact is a common symptomatic trigger, it isn't the only one. Wearing tight pants, riding a bike or sitting down for a long time can also cause a flare-up.

Doctors suspect the discomfort stems from an overabundance of nerve growth around the vulva, but they also emphasize that it manifests differently among the one in six adult women who will experience it. Also, there are no external symptoms of vulvodynia and no known contributing factors, which is perhaps one of the reasons why women will visit up to six physicians before receiving an accurate diagnosis. Or maybe the diagnosis debacle simply stems from medical ignorance. After all, it was just in October 2006 that the American Congress of Obstetricians and Gynecologists encouraged its members to brush up on the hallmark symptoms and treatment options.

Like many in the medical community, vulvodynia is relatively new news to me as well. When I began researching it for an episode of my podcast "Stuff Mom Never Told You," I had assumed erroneously that it was something more along the lines of anorgasmia or a yeast infection. Along with gynecological research and statistics, the flood of podcast listeners who wrote in sharing vulvodynia horror stories punctuated by insensitive doctors, fruitless prescriptions and frustratingly nonexistent sex lives hammered home just what these millions of women are dealing with.

Here's a snippet from some of those vulvodynia victims:

"I saw four different doctors before my vulvodynia was diagnosed and treated. The first gynecologist actually blamed the pain during intercourse on my husband's penis being too large!" -- Melissa

"I first experienced (vulvar vestibulitis) about 15 years ago and went to my female family doctor. She dismissed it." -- Su

"I went to several doctors who did not know how to treat it. A few insisted that I had herpes, which was not true since I had tested negative for every STD. It was incredibly frustrating." -- Erika

To be clear, vulvodynia is neither an STD nor a sexual dysfunction. Those female patients I've heard from would love to be able to have a healthy, routine sex life because their sex drive is still intact. For some, in fact, that's the primary reason they sought medical treatment in the first place. However, women suffering from vulvodynia may shy away from sexual contact since it's incredibly painful on a neurological level. Studies have also discredited any correlation to prior sexual abuse, as some practitioners previously thought. On the bright side, long-term treatments for vulvodynia, such as pelvic floor muscle therapy and topical pain killers, can work. But the first -- and arguably most confounding -- step is getting the proper diagnosis, rather than the runaround in the exam room.

For women who aren't affected by vulvodynia, there's still good reason to educate yourselves as well. Although the medical community is directing more attention and research funding to understanding and spotting the chronic condition, a knowledge gap still clearly exists. The more women who raise vulvodynia awareness to their doctors, girlfriends, partners and daughters, the more patients can know what questions to ask and treatments to seek out should the condition arise, typically between ages 18 and 25. If not spread the word about vulvodynia for yourself, do it for those 13 million vaginas.

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