Vulvodynia Workshop Highlights Prevalence of Disorder

Many women have it, but few talk about it. Some will seek out doctor after doctor-typically, about five-before getting a diagnosis.

Vulvodynia is a condition characterized by burning, stinging, irritation, or rawness of the female genital area when there is no apparent infection or skin disease that could cause these symptoms. Vulvodynia includes vulvar vestibulitis (pain on contact in the vulvar vestibule) and vulvar dysesthesia (unprovoked, generalized vulvar pain). An estimated 14 million American women may have vulvodynia at one point in their lives, although for many women the condition remains undiagnosed. Vulvodynia can have a profound impact on a woman's quality of life, hindering her ability to exercise, have sexual intercourse, and take part in social activities.

Recently, more than two hundred researchers, clinicians, and members of the public gathered at the National Institutes of Health (NIH) to take part in the workshop, "Vulvodynia-Toward Understanding a Pain Syndrome." Phyllis Leppert, M.D., Ph.D., of the National Institute of Child Health and Human Development (NICHD), and Maria Turner, M.D., of the National Cancer Institute, chaired the workshop. Participants presented an overview of the science and incidence of vulvodynia, classified the varieties of vulvar pain, devised research approaches to studying the condition, and developed strategies for alleviating vulvar pain.

The workshop was sponsored by the NICHD, along with the NIH's Office of Rare Diseases and Office of Research on Women's Health.

Bernard Harlow, Ph.D., of Brigham and Women's Hospital's Obstetrics and Gynecology Epidemiology Center in Boston, reported that in his study, 16 percent of more than 3,000 women who responded to a survey said they had experienced chronic, or long-term, burning, knifelike pain or pain on contact that lasted three months or longer. Nearly seven percent of the respondents were experiencing pain at the time of the survey.

Dr. Harlow and his coworkers also found that Hispanic women were 80 percent more likely to experience chronic vulvar pain than were white and African American women.

The findings were published in the April issue of The Journal of the American Women's Medical Association.

Other research highlights from the conference include:

• Sophie Bergeron, Ph.D., Universite de Quebec, Montreal, reported that vulvar vestibulitis may require treatment spanning a variety of medical specialties, including group cognitive behavioral therapy, biofeedback, and vulvar surgery, to relieve pain and associated sexual impairment over the long term.
• Nina Bohm-Starke, M.D., Karolinska Institutet, Sweden, presented evidence that vulvar vestibulitis may result from inflammation (swelling) brought on by the nerves of the vulva.
• Jacob Bornstein, M.D., Carmel Medical Center, Haifa, Israel, reviewed the literature regarding the results of vestibulectomy-surgical treatment for vulvodynia. Surgery was most successful in women who were determined to have vulvar vestibulitis, but it did not help women already experiencing unprovoked, generalized vulvar pain
• David Foster, M.D., University of Rochester, presented his work on vulvar vestibulitis. He found that this disorder does not consistently show classic evidence of inflammation, such as white blood cells in the tissue. He reported that a subgroup of cells in the vulvar area near the vaginal opening show a density of prostaglandins-molecules that indicate inflammation-greater than cells in other areas of the vulva.
• Donald C. Manning, M.D., Ph.D., University of Virginia, and Calgene Corporation, described the complexities of developing and testing new drugs for pain, some of which have the potential for treating vulvodynia.
• Barbara Reed, M.D., University of Michigan, reported that many of her patients sought out doctor after doctor for more than five years before receiving a diagnosis of vulvodynia.
• Jay P. Shah, M.D., NIH Clinical Center, discussed the role that a category of pain known as myofascial pain and dysfunction might play in vulvodynia. Vulvar myofascial pain occurs when a muscle becomes overloaded due to tense pelvic floor holding patterns or trauma, causing extremely irritable bundles of fibers to become "knotted." These bundles, known as myofascial trigger points, lead pain to other areas.
• Elizabeth G. Stewart, M.D., Harvard University, presented an overview of current therapies for vulvodynia, including estrogen, corticosteroids, acupuncture, physical therapy, biofeedback, antidepressants, and surgery. A low-oxalate diet combined with calcium pills has been helpful in some cases. Oxalates are found in certain vegetables such as eggplants.
• Karl B. Thor, Ph.D., Dynogen Pharmaceuticals, Inc., and Duke University Medical Center, presented new findings suggesting that nerve damage caused by surgery to repair injury resulting from childbirth may result in vulvodynia. He described the anatomy of the newly discovered Human Levator Ani Nerve, and theorized that damage to this nerve may play a role in vulvodynia.
• Ursula Wesselmann, M.D., Ph.D., Johns Hopkins University School of Medicine, reported on her study of chronic visceral (internal organ) pain. She discussed her finding that different types of pain caused by different pain mechanisms may occur in the same person.

This is the second NIH-sponsored workshop on vulvodynia. The first, "Vulvodynia Workshop:
Current Knowledge and Future Directions," was held at NIH in April 1997. Sponsored by the NICHD, the National Institute of Arthritis and Musculoskeletal and Skin Diseases, and the Office of Research on Women's Health and the Office of Rare Diseases, NIH, the 1997 workshop explored the state of the science by reviewing definitions, epidemiology, and treatments for vulvodynia.

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The NICHD is part of the National Institutes of Health (NIH), the biomedical research arm of the federal government. NIH is part of the U.S. Department of Health and Human Services. The NICHD sponsors research on development, before and after birth; maternal, child, and family health; reproductive biology and population issues; and medical rehabilitation. NICHD celebrates its fortieth anniversary in 2003. NICHD publications, as well as information about the Institute, are available from the NICHD Web site, http://www.nichd.nih.gov/, or from the NICHD Information Resource Center, 1-800-370-2943; e-mail NICHDInformationResourceCenter@mail.nih.gov.

Under the leadership of the NIH's Associate Director for Research on Women's Health, the Office of Research on Women's Health (ORWH) advises the NIH Director and staff on matters relating to research on women's health; strengthens and enhances research related to diseases, disorders, and conditions that affect women; ensures that research conducted and supported by NIH adequately addresses issues regarding women's health; ensures that women are appropriately represented in biomedical and biobehavioral research studies supported by NIH; develops opportunities for and supports recruitment, retention, re-entry, and advancement of women in biomedical careers; and supports research on women's health issues. The ORWH works in partnership with the NIH institutes and centers to ensure that women's health research is part of the scientific framework at NIH and throughout the scientific community. Information about women's health and ORWH is available at: http://orwh.od.nih.gov/.

The Director of the Office of Rare Diseases (ORD) serves as the NIH Director's advisor on rare diseases issues. The goals of the ORD are to stimulate, coordinate, and support research on rare diseases in response to the needs of patients who have any one of the more than 6,000 rare diseases known today, many of which may be under diagnosed or may go undiagnosed for long periods of time. ORD supports a scientific conferences program to stimulate research where little exists, where research progress may have stalled, or in response to scientific opportunities. More information about the ORD is available at http://rarediseases.info.nih.gov/ and about rare diseases from the Genetic and Rare Diseases Information Center at http://rarediseases.info.nih.gov/GARD/