While the description isn't entirely accurate, the problem is very real - and more widespread than previously believed, according to new research from the University of Michigan Health System. The little known condition, called vulvodynia, involves chronic and potentially severe pain at the outer genital region, or vulva.
"We used to think this was rare," says study author Barbara Reed, M.D., MSPH, professor of Family Medicine at U-M Medical School. "It turns out it's much more prevalent than we thought: 3 percent of women report chronic pain and 1.7 percent currently have pain. That's millions of women across the United States."
In a Web-based survey of 994 women, researchers found 27.9 percent of women had experienced pain at the vulvar vestibule, the opening to the vulva, and 3 percent reported chronic pain. Previously, researchers estimated as few as 150,000 women were effected by vulvodynia. The paper was published in the January issue of the Journal of Lower Genital Tract Disease.
In the fourth of season of the HBO comedy Sex in the City, the character Charlotte was diagnosed with vulvodynia, a chronic pain condition that can be specific to the opening of the vulva or generalized throughout the vulvar region. Pain is typically worse during intercourse.
"There's a spectrum of pain involved that's different in each woman," Reed says. "For some women, the pain is quite intense and debilitating - they know something is wrong. For other women, it's mild and they think it's supposed to hurt. As more women hear about this condition, they'll be coming out of the woodwork."
Currently, few doctors are familiar with vulvar pain disorders, and many women with intense pain are misdiagnosed for years with chronic yeast infections or psychological problems. Women with more mild pain or whose pain comes and goes often think some degree of pain in that area is normal and don't tell their doctors about it.
In the study, surveys were sent to a random selection of women age 18 or older who had signed up to participate in Internet-based research through a service called SurveySpot. The women were told the survey was on women's health issues. The focus on vulvar pain was not obvious till participants were well into the survey.
Study authors found half of the women surveyed had at some point experienced pain during intercourse, either deep inside the vagina or at the opening. Pain at the vestibule was reported by 27.9 percent of women and 3 percent said the pain lasted more than three months. Women who had previous pain that resolved were more likely to rate their worst pain ever as moderate or mild, but 80 percent of women who were currently experiencing prolonged pain said that pain was severe.
In addition, the study sought a large number of African-American women to determine whether the popularly held belief that this group rarely has vulvodynia was true. A third of the study participants were African-American.
Surprisingly, the researchers found African-American women were as likely to have had pain with intercourse and pain at the vulvar vestibule as Caucasian women. Researchers had previously suggested that African-American women were less likely to experience vulvodynia because few sought treatment for it from their doctors.
Symptoms of vulvodynia include a constant or intermittent burning sensation in the outer genitals. This is frequently made worse by physical contact, such as intercourse, tampon use or tight clothing.
With vulvodynia, nerves in the area are hypersensitive. Treatment involves drugs that control nerve sensitivity, such as Neurontin, Elavil and the antidepressant Paxil (hence Charlotte's "depressed vagina"). Treatment may also include physical therapy.
"Often the women I see have gone years with this pain, yet the majority of women see great relief with treatment," Reed says.
Researchers plan to look further at why symptoms of vulvodynia disappear in some women while pain remains chronic for other women.
The study was funded in part by a grant from the U-M Department of Family Medicine. In addition to Reed, study authors include Scott Crawford, M.A., of MSInteractive in Livonia, Mich.; Mick Couper, Ph.D., of the U-M Institute for Social Research; Christin Cave of the U-M Undergraduate Research Program; and Hope K. Haefner, M.D., from the U-M Department of Obstetrics and Gynecology.
More information about vulvar diseases can be found at the U-M Center for Vulvar Diseases at www.med.umich.edu/obgyn/vulva. Patients can call (734) 763-6295 for appointments.
Kara Gavin, firstname.lastname@example.org