(WOMENSENEWS)–Phyllis Mate’s intention wasn’t initially to tell doctors what to do. But when a support group she helped found transformed itself into an advocacy organization, she began pushing for conferences and produced a teaching compact disc to instruct practitioners how to diagnose and treat her pain condition.
“We’re a patient group developing teaching tools for doctors–it’s kind of nervy of us,” said Mate.
Mate didn’t always feel so well-informed. Back in 1994, a doctor put her in touch with four other women with vulvodynia, or vulvar pain. Vulvodynia sufferers often experience a sharp, burning pain at the vaginal entrance. Pain is felt when pressure is applied to the area, particularly during sexual intercourse, but also often when sitting, bike riding or on contact with pants or underwear. Some women experience constant burning without any external trigger.
After a few meetings over lunch, the support group took one giant step further and founded the National Vulvodynia Association, a grassroots nonprofit in Silver Spring, Md., aimed at educating patients and doctors about the disorder. If there were five sufferers in their local area, the women figured many others must also experience vulvodynia symptoms. To get the word out, they developed a national database of doctors who treat vulvodynia and mailed them brochures and sent mailings to national magazines.
In 1997, Mate’s organization pressed the National Institutes of Health in Bethesda, Md., to organize a conference on the illness. After that conference, Mate and others from the association visited Peter Reinecke, legislative director for Tom Harkin, the Iowa Democratic senator and member of the Senate Health Appropriations Committee, which makes recommendations on medical-research funding.
“He was impressed with our tenacity and our cause,” said Mate. At their behest, Reinecke crafted language to include vulvodynia research in the 1998 National Institutes of Health appropriations report. Beginning in 2001, the National Institutes of Health earmarked $1 million a year for five years for the research.
Findings from the first of these National Institutes of Health–funded studies–along with other research–was presented by clinicians and scientists from major medical institutions, at a second vulvodynia conference, held in April at the National Institutes of Heath.
According to one study, conducted by Dr. Elizabeth Stewart and Dr. Bernard Harlow of the Harvard School of Public Health, 16 percent of U.S. women–or approximately 14 million–are likely to experience vulvar pain in their lifetime. The study, which polled about 5,000 ethnically and socio-economically diverse women in Massachusetts, was published in the spring 2003 issue of the Journal of the American Medical Women’s Association. According to the study, at least 30 percent of women who suffer vulvar pain did not seek medical care, and of those who did, 60 percent saw three or more doctors, many of whom could not provide a diagnosis.
“That’s right,” said Stewart, “good vulvovaginal education for clinicians is often not happening in the USA today.” Stewart directs the Stewart-Forbes Vulvovaginal Specialty Service at Harvard Vanguard Medical Associates in Boston. She is an internationally-known vulvodynia expert and author of “The V Book: A Doctor’s Guide to Complete Vulvovaginal Health,” published in 2002.
Clinicians have always thought that vulvar pain was a problem of fair-skinned, Caucasian women, but Harlow and Stewart have shown that African American women are just as likely to have it. Among the women sampled, Hispanic women were 80 percent more likely to experience chronic vulvar pain.
“We don’t know why that is, whether it is a genetic difference, early life events, or as yet undiscovered factors,” said Harlow.
Harlow’s previous research of depression estimates that a similar percentage of women suffer depressive symptoms as experience vulvodynia.
“Depression is one of the most important public-health problems for women today, and if vulvodynia comes anywhere close to that, we’re talking about a condition that has truly been overlooked,” he said.
Sophie Bergeron, a psychologist at the University of Quebec at Montreal presented the first randomized study of the effectiveness of three types of treatment for a type of vulvodynia called vulvar vestibulitis, very localized pain at the entrance to the vagina. Subjects were either treated with surgery to remove the strip of painful tissue around the vagina, biofeedback therapy or cognitive behavioral therapy.
All treatments in her study yielded a reduction in symptoms, but surgery, which involves removing the painful tissue at the entrance to the vagina, was the most successful of the three treatments. Surgery remains controversial however, said Bergeron, because it’s an invasive procedure and the reasons why it works have been unclear until recently.
“Surgery isn’t a first-line treatment, and it’s not for every woman with vulvodynia,” she adds, and recommends that women be offered a variety of therapies to see which is best at reducing pain and improving sexual functioning and quality of life.
Dyspareunia, or pain during intercourse, is listed in the DSM IV, the manual that officially classifies all psychiatric problems. Bergeron hopes her study will encourage clinicians to view the vulvodynia as a pain problem and not a sexual or psychological problem.
“Pain in the genitals is interpreted as a sexual problem, but it’s a pain problem like any other,” said Bergeron. “Headaches interfere with sexual activity, but they’re not considered a psychiatric disorder,” she added.
Advocacy Trickles Up From the Grassroots
In 1994 there wasn’t a single Web site that mentioned vulvodynia or offered an explanation for any such symptoms, which rankled Mate. The association set up their own site, and hundreds of visitors found it in the first month. Within six months, Mate had received hundreds of calls from women requesting information about causes of the disease, a local doctor’s name or a sympathetic ear and the organization was taking off.
Today the association has an annual budget of about $100,000, provided primarily by private donors, along with a few foundation and corporate grants. Mate, executive director for seven years, doesn’t draw a salary from the organization.
Amy Kaler, a sociologist at the University of Alberta in Canada, agrees that the condition is overdue for publicity and greater medical attention.
“Vulvodynia, as a medical condition and as a condition that unites many very different women is about where breast cancer was a couple of decades ago,” said Kaler. “Women with breast cancer have rejected the idea that their condition is stigmatizing or shameful, and have gotten actively involved in pressing for resources and public education. Women with vulvodynia are now doing the same, and also supporting each other to live the best life they possibly can.”
Women with the illness have indeed started to demand more treatment options.
One such woman, Tara Greenway, who was diagnosed with vulvodynia after visiting doctors for many years, is now a volunteer advocate for the New York Area Vulvodynia/Vestibulitis Support Association, one of many groups that the National Vulvodynia Association has fostered and publicized around the country. She said that the support group helped normalize her illness.
“I felt completely alone with this bizarre condition before I went to a meeting of other women with vulvodynia,” she said. “Some women were in more pain than I was, which was upsetting. But some were doing better and were sharing information to help others take action and get out of pain.”
Since there are still no definitive answers about cause or treatment for women with vulvodynia, Mate considers her advocacy far from over. The National Vulvodynia Association is now raising money to disseminate their teaching CD to all gynecologists affiliated with the American College of Obstetricians and Gynecologists and has set the wheels in motion to form a multi-center research network that could coordinate the testing of promising treatments. They have also decided the organization has outgrown its volunteer staff and are looking to hire an executive director.
Mate is satisfied with her group’s accomplishments but overwhelmed by all the activity. “There’s so much happening, I need a clone,” she said.
Kathleen Nelson is a freelance journalist in New York City.
For more information:
National Vulvodynia Association (NVA):
Yahoo Groups: Vulvodynia:
The V Book: A Doctor’s Guide to Complete Vulvovaginal Health: