Vulvodynia Awareness -- Too Little, Too Late

The National Institutes of Health has recently launched a Vulvodynia awareness campaign aimed at advocacy groups, health care providers and research organizations. It's better late than never -- as is, women must see an average of 4-5 health-care providers before they receive an actual diagnosis due the ignorance of the condition in the medical field. A good majority of gynecologists, who specialize in women's health, often misdiagnose or shrug off the condition, as do the dermatologists, psychologists, and sex therapists patients are referred to out of desperation. Research has shown that women with vestibulitis (the most common form of vulvodynia affecting pre-menopausal women) have increased rates of depression, anxiety, sexual dysfunction, and impacts her sense of gender-role identity negatively.

However, this given, this campaign has one fatal flaw -- lack of research. Many women can obtain a diagnosis by locating a doctor through phone calls that treats the condition, but can expect to try many treatments that offer little relief. So far, failing surgical procedures, existing treatments have failed to show more than a 50% improvement rate in patients. That in itself is improvement, not anything close to permanent relief. This reason is dominantly due to the fact nobody understands why any type of vulvodynia develops. Pure vulvodynia (constant, unprovoked pain of the entire vulva) is believed to be neurological in origin, and treatments focus on decreasing nerve response, despite the lack of an underlying cause. Vulvar vestibulitis syndrome (severe pain that manifests in the vulvar vestibule and is purely provoked) is believed to be either an autoimmune response due previous chronic vaginal infection, or a proliferation of nerve fibers to super-normal amounts -- some biopsies have shown up to 3000% the number of nociceptors (nerves that exist solely to detect pain and stretch) present in afflicted women versus control groups, concentrated into the vestibule and vestibular glands. Most women have non-specific, very painful inflammation of the glands. Why the nerves proliferate is not clear; some believe it to be a congenital problem, or birth defect, but women with secondary VVS have developed concentrations after periods of being pain-free.

The mainstays of treatment thus far have been to reduce the nerve function by use of antidepressants or surgical excision; otherwise, topicals to try to reduce inflammation and pain.Very few of these are anything close to a cure; even the high rates of success with surgery leave some women worse or unimproved. The NIH is to be commended for FINALLY giving some of its attention to this very painful, very damaging condition, but they need to get the message loud and clear that without some serious grants to find the cause and available treatments, more people WILL become aware, but let down in the same way millions of others have.

(Interestingly, awareness had already been gaining momentum; VVS was featured recently on the ABC television show "Private Practice". Just like with this news, suffers were glad to see awareness, but were bummed to see it portrayed so unrealistically/neglect details/be outright offensive. The entire show gravitated around "saving the couple's marriage" -- without so much as mentioning options to have other types of sex, impressing the need of the male partner to be supportive and kind, let alone that it would be outright CRAPPY for their marriage to break up due a medical condition. Not to mention, it pulled one of the basic medical drama's omg-diagnosis-last-minute-here's-treatment-you're-cured; the woman on the show received a lidocaine injection/nerve block, which does not treat the symptoms, but gives TEMPORARY relief of the pain. Obviously, this sort of awareness, like the kind the NIH is proposing, will mislead others to think there's a cure, or even a reliable treatment, available, which could do more harm than good.)

Lack of available treatment also denies the males in charge of these places adequate relief to their female partners so as to prohibit heterocourse, as is bound to happen with the estimated 15% of women inflicted with this problem. Perhaps that reminder is the only way to light a fire under their butts, if women's continued suffering won't?

As this blog pointed out, too, how can this campaign even aim to raise proper awareness when they continue the genital shaming that keeps sufferers silent through misnomers like "pain down there" or "feminine pain"? Lord forbid anyone, even medical professionals, feel forthright enough to say "Her vulva hurts"!