When Maxwell Williams learned a female friend of his was incapable of having sex without feeling excruciating pain, but struggled to find a doctor who would take her pain seriously, he decided to investigate what was really causing the stabbing sensation that doctors kept telling his friend was all in her head. He met about a dozen women who shared his friend’s experience, including one whose marriage unraveled because of it, and he learned of vulvodynia, a medical term that in Latin, roughly translates to vulva pain. The condition plagues far more than the dozen women he spoke with — as much as 16 percent of the female population, or 14 million women, markedly more than those who experience endometriosis or breast cancer. So why don’t we know about it? And why are treatment options so scarce?
“Women’s gynecological disorders that can’t kill you, that are not life-threatening, have gotten minuscule amounts of money from [the National Institutes of Health],” says [co-founder, board president, and one-time executive director of the National Vulvodynia Association (NVA) Phyllis] Mate. “That includes endometriosis and uterine fibroids and vulvodynia. The stupidity of it is that gynecological disorders are lumped with pediatrics in the same institute. So, you’re competing with funds for [studies for] children.”
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