Lucy was dating the man who would become her husband and enjoying every moment. Soon after, without warning, she began to feel discomfort and then pain in the genital area. It got so bad she couldn't even insert a tampon.
The pain made having sex impossible, too. At first, she thought she had a yeast infection. Eventually, her doctor diagnosed her with vulvar vestibulitis, an inflammation of the tissues surrounding the entrance to the vagina. Putting pressure on the inflamed area can result in severe pain. In Lucy's case, the pressure occurred during intercourse.
The condition is usually accompanied by burning, stinging, and irritation or rawness of the affected area. Laser surgery to remove some of the painful tissue improved the problem only temporarily, and Lucy went on to suffer for four more years.
Lucy says her husband has been very understanding. ''My husband and I learned to have a sexual relationship that didn't involve intercourse, but it really put a damper on things."
Few people have heard of vulvar vestibulitis (one form of a broader category of problems called vulvodynia), although it affects at least 200,000 women in the United States, according to the International Pelvic Pain Society. Says C. Paul Perry, MD, the president of the society, ''We think the numbers are [even] higher because it is often misdiagnosed or women are not willing to talk about it.''
The condition wasn't recognized by medical science until the 1980s. Before that time, doctors passed off vulvar pain as psychosomatic and frequently sent their patients to a mental health professional.
Recently, however, researchers may have found a cause for this painful condition. A study published in the American Journal of Obstetrics and Gynecology in February 2000 showed that a genetic disorder could be to blame. More than half of the 68 women in the study with diagnosed vulvar vestibulitis were found to have this genetic abnormality.
"In vulvar vestibulitis, something triggers inflammation, but then it doesn't go away," says Steve Witkin, PhD, a co-author of the study and a researcher at Cornell University. The gene the researchers looked at is involved in ending the inflammatory response in most women. But a lot of the women with vulvar vestibulitis have a rare form of the gene that makes them less able to stop the inflammation, Witkin says. These women also often suffer from other inflammatory problems such as nasal congestion.
The study could be the first step to finding a treatment that works, says William Ledger, MD, another co-author of the study and a Cornell University gynecologist who studies infectious diseases. Since anti-inflammatory drugs haven't helped, the hope is to develop a drug to do what the defective gene cannot. But research funds are not plentiful, Ledger says, partly because the disorder takes a back seat to more life-threatening conditions.
Meanwhile, doctors and their patients usually explore a number of options to find a treatment that might help.
For Lucy, the answer was biofeedback, a technique that measures specific body responses, such as heart rate or muscle tension, and relays them back to the user in the form of sounds or lights so the user can become aware of these responses and learn to control them.
Biofeedback was first used to treat vulvar vestibulitis in 1995 by Howard Glazer, PhD, a clinical associate professor of psychology in obstetrics and gynecology at Cornell University. Glazer says about 90% of his patients have significantly reduced pain through biofeedback, to the point they can have sexual intercourse comfortably -- like Lucy, who enjoys intercourse with her husband once again and now has two children. "In biofeedback you reduce the painful inflammation of the skin by stabilizing the pelvic muscles," says Glazer, whose studies have been published in the September, 1999 issue of the Journal of Reproductive Medicine and elsewhere.
Nora has found relief with a series of injections of interferon, an antiviral and antitumor medication that has been shown to block the inflammatory response in some women. For example, a January 1993 study in the Journal of Reproductive Medicine found that 27 of 55 patients (49%) treated with the drug reported "substantial or partial improvement." Before she tried this treatment, Nora had consulted 12 doctors. Most said there was nothing wrong with her. ''I'm the most optimistic person in the world,'' she says, ''and I became borderline suicidal.''
Surgery to remove the painful tissue helped improve or cure the condition in up to 89% of women, according to a study published in the June 1995 issue of the Journal of Women's Health. But only a third to a half of them enjoyed long-term relief, defined as more than four years. And surgery sometimes makes the condition worse.
Physical therapy is another potential treatment avenue. A study in the May-June 2002 issue of the Journal of Sexual Marital Therapy shows that 71% of women who took part in physical therapy sessions saw moderate to great improvement in pain.
Many women experience occasional mild flare-ups even after a successful treatment. But Lucy and Nora feel lucky: They are still free from chronic pain and remain sexually active. Like others with the problem, they hope that the discovery about the defective gene will spur the development of a new treatment and make more doctors aware that vulvar vestibulitis is a disorder that warrants attention.
Elaine Marshall is a freelance writer living in Reno, Nev. She also reports for Time magazine and teaches at the Reynolds School of Journalism at the University of Nevada, Reno.