Two NIH scientists have been honored with the 2007 Christin Veasley said it took visits to several health care professionals before she received a diagnosis and 7 years before she received effective treatment. She considers herself fortunate, however, because many vulvodynia patients are not able to find treatment for—or even name—their disease. “Women feel embarrassed,
ashamed, and isolated,” she explained, “but it is so important for women to educate themselves, become their own advocates, and most importantly never give up hope.”
ulvodynia—a diagnosis of pain that women experience “down there”—is not something most women talk about with their friends and family, much less with their health care providers.
The Office of Research on Women’s Health recently announced an NIH Vulvodynia
Awareness Campaign to help educate health care practitioners and the public about chronic pain of the vulva, the area around the outside of the vagina. The campaign kicked off with a media conference held at the National Press Club in Washington, D.C.
Researchers estimate that as many as 18 percent
of women will experience symptoms of the disorder. Like Veasley, who also serves as associate
executive director of the National Vulvodynia
Association, many women suffer with unexplained
vulvar pain for months or years before a correct diagnosis is made and an appropriate treatment plan is begun, primarily because the persistent condition has no apparent cause, no cure and no single effective treatment. Lack of sufficient consumer and health care provider information likely contributes to delayed diagnosis,
which prolongs the suffering of patients.
“The time has come to talk openly and directly
about vulvodynia—its symptoms, diagnosis
and treatment—so that the quality of life…can be improved,” said Dr. Vivian Pinn, ORWH director, at the campaign launch.
In addition to Veasley and Pinn, a distinguished
panel of experts in vulvodynia discussed
treatment, diagnosis and psychological aspects of the disease.
More than 30 federal and non-federal organizations
partnered with ORWH on the campaign. Through the efforts of this collaborative and diverse group, the campaign will get educational
materials to the public and to health care providers. Campaign materials—including fact sheets and scientific articles—are available on the ORWH web site at http://orwh.od.nih.gov/vulvodynia.html.