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.
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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
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.