Phyllis Mate, 58, the cofounder and executive director of the National Vulvodynia Association, has generalized vulvodynia—the kind where the vulva hurts all the time. It started in her 20s with a very mild burning, she says. Doctors prescribed topical cortisone, which didn’t help. Then at 41, her condition "exploded," she says. "It was excruciating, knife-like pain all the time, day and night."
Mate was lucky enough to end up in the office of a neurologist who was familiar with vulvodynia and had several other patients with the condition. Simply having a diagnosis was a huge relief for her. "For the first time since my 20s, I wasn’t this weird person who had something that no one else had," Mate says.
Mate was bedridden for six months and used Percocet to treat the pain, but it became less effective as her body adjusted to the medication. "It was the worst thing that I can ever imagine having, in terms of the pain," she says. The only plus? "Very few of my doctors ever suggested that it was in my mind."
Finally, she tried two pudendal nerve blocks—anesthetic injections—administered five days apart by a pain specialist. "My pain went from a 10 out of 10 to a 6 or a 5," Mate says, "which, for me, was heaven." Since then she has used the anticonvulsants Tegretol and Trileptal to manage the pain, and she also avoids sitting for more than an hour at a time.
Mate’s condition has not been cured, but it has become manageable. "Most days, it’s at a 3," she says. "There are actually days when I don’t realize I have it."
Phyllis’s advice for women with her subtype of vulvodynia? "Get to a pain specialist," she says. "Pain specialists will treat pain much more aggressively than other types of doctors."
Lead writer: Louise Sloan
Last Updated: September 11, 2008
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