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Saturday, Jul 4, 2009
It can keep you from having sex, wearing jeans, even riding a bicycle -- and 16 percent of all women will have it at some point in their lives. So why is there no cure for vulvodynia?
Sep 4, 2003 | Leslie tried creams, topical acid, surgery, horse tranquilizers -- even denial -- but for more than 10 years, nothing would stop the pain. She ended a relationship, stopped having sex, filled in the gaps in her social life with gay men. Why? Because Leslie (not her real name), a 34-year-old corporate lawyer in Manhattan, suffers from, arguably, the most uncomfortable kind of discomfort: genital pain. In her case, vulvodynia -- literally, pain in the vulva.
"People are talking and learning about it more now, but I feel like I'm on the forefront of this shit," sighs Leslie who, with the right combination of doctors, therapists and treatments, finally has the condition under control. "Twice now I've brought it up to someone who's said, 'Oh, I know someone else who has that.' There are all these women fumbling in the dark."
According to the latest estimates, in fact, 6 million women are suffering from vulvodynia right now. "It's the condition that everybody thought nobody had," says Christin Veasley, director of research and professional programs at the National Vulvodynia Association (NVA), a nonprofit organization created in 1994 to improve the lives of people affected by the condition.
And yet while vulvodynia plagues millions of women, it is a misunderstood and understudied women's health problem. An interesting comparison: In 1992, the National Institutes of Health funded 60 studies on endometriosis, another painful women's health disorder that affects 5 and a half million women, compared with only six studies they have conducted on vulvodynia -- ever. The latest research, done at Boston Brigham and Women's Hospital and published in April's Journal of the American Women's Medical Association, found that 16 percent of women will experience chronic vulvar pain, described as a burning, stinging or stabbing sensation, either constant or on contact, ranging from annoying to disabling, and lasting three months or more. This "lifetime cumulative estimate" means that 14 million American women, of all races, will experience vulvodynia of some kind at some point -- 5 percent of women before age 25. Vulvodynia strikes white and African-American women at similar rates, but for reasons yet undetermined, Hispanic women are 80 percent more likely to be affected.
And yet even though the condition is so widespread, roughly 30 percent of women will not seek medical treatment for vulvodynia, even when the pain is keeping them from having sex. Many assume from the burning and itching that they've got the yeast infection from hell (as do some doctors even when there's no yeast present ) and -- futilely -- wind up mainlining over-the-counter Monistat. Some, depressingly, may not realize that intercourse is not supposed to be painful. And there are likely a handful who are so freaked out by vagina pain to begin with that they just keep walking around with their deep, dark, painful secret. Those who do seek treatment -- generally those in the most pain -- typically see five doctors before getting a proper diagnosis and worthwhile treatment options.
Readers with total "Sex and the City" recall may be thinking, hmm, vulvodynia, isn't that what Charlotte had on the season premiere a couple of years ago? Yes. Problem is, on the show, Charlotte was told that her condition was not serious, "mostly just uncomfortable," and was sent off with some pills to "get it under control" -- which apparently worked by the following Sunday.
The subject of another high-profile case study was much less fortunate. In 2001 Susanna Kaysen, of "Girl, Interrupted" fame, published "The Camera My Mother Gave Me," a spare, graphic account of her own battle with the debilitating vulvar pain. Kaysen writes (brace yourself): "Some days my vagina felt as if somebody had put a cheese grater in it and scraped. Some days it felt as if somebody had poured ammonia inside it. Some days it felt as if a little dentist was drilling a little hole in it." Even when the pain fades temporarily, she knows it'll come back, especially if she has sex with her then-boyfriend (who totally doesn't get it). The constant presence, or threat, of pain thus transforms -- narrows, disfigures -- her entire life. "My vagina had died," she writes. "I'd forbidden it to express interest in any person or activity, because I knew if I indulged it it would start up with that zing, sting stuff again. Exiled, starved, and in solitary confinement, it had eventually succumbed."
Though she lives in the Boston area, the doctor capital of the world, Kaysen never found a workable medical treatment. Today, Kaysen hasn't so much lost or won her battle; rather, she's signed a treaty, with massive concessions. "Celibacy is a great cure!" she said wryly in a recent phone conversation. "I wasn't interested in having sex again. The only thing I was interested in was not having pain. Pain eclipses desire."
For Phyllis Mate, 54, executive director of the NVA, a mild form of vulvodynia started in her 20s and became such severe knifelike and burning pain in her late 30s that she could barely walk. She wound up in bed and on Percocet for months; her doctors were baffled. "It was the first time in my life I thought about suicide," she recalls. "I remember saying to myself and my friends that if I had to live like this for the rest of my life, I'd rather be dead." Mate still cannot wear pants or pantyhose, ride a bicycle, or sit for longer than about 30 minutes at a time without pain. But -- with the help of anticonvulsant medication -- the pain is not as constant as it used to be. "Now I have weeks where I'm doing pretty well and then weeks where I am doing very badly," she says.
Is no one helping these women? Well, some doctors are trying. Complicating matters, however, is the fact that the term "vulvodynia" describes a condition, not an illness -- it's the symptom, not the cause. It means your vagina hurts like hell, period. It's kind of like when you have "conjunctivitis," which is basically "inflammation of the stuff covering the eyeball" -- could be allergic, could be viral, could be bacterial, depending. As for vulvar pain, doctors struggle with diagnosis and treatment mainly because vulvodynia is what you have when you don't have a specific infection or other vaginal disease. It's often completely invisible, too.
"It's a rule-out diagnosis," says Dr. Elizabeth Gunther Stewart, a coauthor of the Boston study and author of "The V-Book: A Doctor's Guide to Complete Vulvovaginal Health." "There's a long list of physiological, gynecological problems -- like skin disorders and infections -- that can cause pain but aren't vulvodynia. People recognize that it exists but are still not very good at treating it. We're just getting started in terms of giving women what they need."
Here's what doctors do know. Vulvodynia generally shows up in two forms. There's Vulvar Vestibulitis Syndrome (VVS), which is pain around the vaginal entrance only upon touch or pressure (sex, gyno exam, even sitting), and there's Dysesthetic Vulvodynia (DV), which is diffuse, unprovoked pain. Its various causes appear to include irritation or injury of the pudendal nerve (one of the main nerves in the genital region), allergies or chemical sensitivities (reactions to irritants either external, such as detergent, or internal, such as the salts called oxalates in urine), abnormality in the pelvic floor muscle (such as "hypertonicity," or excess tension at rest), and genetic susceptibility to certain types of inflammation. Depending on what they think is the cause, doctors may try topical anesthetics or estrogen, tricyclic antidepressants (for pain, not depression), specialized physical therapy, or even surgical removal of troublesome nerve endings.
