Most Common Cause of Intercourse Pain in Young Women is Target of University of Rochester Study
$1.2 million NIH Grant to Test Treatments for Vulvar Vestibulitis
September 29, 2003
Christine White couldn’t imagine enjoying sex, let alone having a baby.
"The medications will target the pain with the idea that, while you’re treating the pain, the inflammation will heal."
Suffering for years from vulvar vestibulitis, arguably one of the best-kept women’s health secrets, she found even the thought of intercourse painful. Today, after successful treatment and the birth of her first child, 31-year-old White gives voice to a condition that has many women suffering in silence.
Vulvar vestibulitis is an inflammation of the tissues that surround the entrance to the vagina. Pressure on the inflamed area causes intense pain, which is often mistaken for infection or dismissed as psychosomatic. At some point in their lives prior to menopause, eight to 15 percent of women experience vestibulitis, though many go undiagnosed, misdiagnosed, or untreated.
A study at the University of Rochester Medical Center will test treatments aimed at relieving the debilitating pain associated with vestibulitis. David C. Foster, MD, MPH, an international authority on diagnosing and treating vulvar pain and disease, is principal investigator for the five-year, $1.2 million trial funded by the National Institutes of Health.
Foster, associate professor and director of ambulatory care in the Department of Obstetrics and Gynecology, is sought out by women from around the world for relief from this mysterious, misunderstood disease that makes sexual intercourse painful if not impossible. Many, like White, learn of his work while searching for help on the Internet and then travel to him for treatment.
Now his years of experience diagnosing and treating the condition are culminating in a study that he hopes will shed light on the disease and offer new hope to women who are suffering from both the physical effects as well as the emotional toll the condition takes.
Though an exact cause is unknown, physicians suspect some women have a genetic predisposition to vestibulitis. Painful flare-ups are often precipitated by some other form of inflammation, such as a bad infection. Sometimes symptoms develop after pregnancy or gynecological surgery.
White’s symptoms appeared eight years ago following gynecological laser surgery for pre-cancerous lesions. When she didn’t recover as expected, her physician rebuked her for not complying with post-operative instructions, even though she knew she’d followed them to the letter.
Constant discomfort eventually led her to a dermatologist. He gave her information about a skin condition he thought might be related to her pain. When she brought that information to her gynecologist, he referred her to a vulvar pain clinic where she was diagnosed with vestibulitis and treated with antidepressants.
White took every bit of advice offered in an effort to relieve her pain – adjusted her diet, checked all products for perfumes and dyes to which she might be sensitive, and even tried biofeedback to help her relax.
“The pain was so intense I couldn’t even wear blue jeans,” White says. “After several years I decided I was not going to be a guinea pig any longer.” She left the clinic and worked on living a healthy lifestyle, eating right and exercising, but the symptoms persisted.
Finally, her physician suggested she consult with an expert in vulvar pain. Though she’d read about Foster’s work at Johns Hopkins, she didn’t realize he practiced near her home in Rochester.
Testing Medical Treatments
Foster’s study will test medical treatments for vestibulitis, approaching it as a pain syndrome, he explains. “The medications will target the pain with the idea that, while you’re treating the pain, the inflammation will heal,” Foster says. “Our research will determine the medications’ effectiveness in attacking the pain in two steps: at the nerve ending and at the spinal cord.”
The study will test the combined use of lidocaine, a topical pain reliever, and desipramine, an antidepressant that affects chemicals in the brain and is expected to alter the brain signal that triggers the pain.
Foster sees an average of five new patients a week affected by the condition. “Nearly 70 percent respond to medical treatment and improve to the extent that they can stop treatment. For others, surgery is a good alternative,” he says.
The treatment could give new hope to women who, like White, generally follow a long and difficult path through diagnosis and treatment. Ultimately, for White, surgery known as perineoplasty brought long-term relief. With perineoplasty, the painful vaginal tissue is removed and healthy, pain-free vaginal tissue is transposed over the affected area.
Addressing the Emotional Toll
The study will also involve behavioral health professionals to address the tremendous emotional toll that is part of vestibulitis.
After years of being told she needed only to relax, and implications that the illness was “all in her head,” a diagnosis and treatment brought White a large measure of relief but left her with the challenge of transitioning from an aversion to intimacy to enjoying a healthy sex drive.
“There was a time when I told my husband, who was then my boyfriend, that I just didn’t think I was ready for marriage,” White says. “It didn’t seem fair to him. The pain interfered with our intimacy and I couldn’t even kiss him. I think I was trying to avoid contact with him so I wouldn’t have to be in an intimate situation.”
At the same time, White’s boyfriend was plotting a surprise proposal. When she told him she wasn’t ready to be married, she knew nothing about the ring he’d purchased, or the hope chest he’d made.
Despite her attempts to call off the engagement, White married and has struggled to regain the intimacy she feels she and her husband deserve. “When the pain was intense, I had no sex drive whatsoever. Now I have it, but it is nowhere what it used to be. It is a slow process to get back in touch with my sexuality and to be able to enjoy it.”
In October 2002, White gave birth to her first son. Her delivery was by Cesarean section, a choice she made hoping to avoid the possibility of inflammation though, in many cases, women with a history of vestibulitis have no difficulty delivering vaginally. For the Whites, the healing process continues.
Eligibility for the Study
Approximately 130 women, ages 18 to 50, are needed for the study. Women who have been diagnosed with vulvar vestibulitis or who experience vaginal pain and suspect they may have it can be evaluated to enroll in the study. Those accepted will participate in a 12-week medical trial with six months of follow-up. They will undergo genetic and psychological testing as well as close monitoring of their pain.
For more information call (585) 275-7919.