National Institutes of Health Provide First Funding on Misunderstood Gynecological Disorder
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Phyllis Mate
NVA President
301-299-0775
pmate@nva.org
National Institutes of Health Provide First Funding on Misunderstood Gynecological Disorder
WASHINGTON – November 15, 2000 – Three research studies on vulvodynia, a painful gynecologic disorder in women, have been awarded federal funding for the first time by the National Institutes of Health. According to Phyllis Mate, Executive Director of the National Vulvodynia Association (NVA), “This funding is a major milestone for the hundreds of thousands of women suffering from chronic vulvar pain, a condition which interferes with their ability to lead full physical, social and sexual lives. We need to find out what causes vulvodynia and develop better treatment strategies.”
Vulvodynia is characterized by chronic vulvar burning, stinging, rawness or irritation. It interferes with a woman’s ability to perform daily activities and engage in sexual intercourse. Symptoms range from mild to severe and can occur on a constant or intermittent basis (please see Background on next page for further information). The National Institute for Child Health and Human Development and the Office of Research on Women’s Health jointly allocated funds and issued requests for research proposals on February 7, 2000. Seventeen research proposals were submitted last spring. The three studies that have been funded will be conducted over the next three to five years. Preliminary results from these studies will be available as soon as one year from now.
Bernard Harlow, Ph.D., Associate Professor of Obstetrics, Gynecology, and Reproductive Epidemiology at Harvard Medical School, will be investigating the prevalence of vulvodynia in his proposed five year study. The study aims to assess demographic, environmental and various other risk factors for vulvodynia. “We are confident that the data generated will expand our knowledge of potential biological determinants and environmental factors that influence the risk of vulvodynia. It is our hope that this understanding will lead to novel treatments for patients suffering from this debilitating disorder,” said Dr. Harlow. The second study will examine possible neuro-immunologic causes of vulvodynia, by examining one hundred vulvodynia patients and comparing their results to those of a control group, i.e., two hundred women who do not have the disorder. In this study, Barbara Reed, M.D., Associate Professor of Family Medicine at the University of Michigan School of Medicine, and her colleagues will be comparing the two groups of women on the following: physical examination, laboratory tests, inflammatory substances in the blood, and density of nerve fibers and levels of inflammatory cells in the vulvar tissue. Dr. Reed commented that “results from this study will lead to improved understanding of neuro-immunologic alterations in women with vulvodynia which will direct future therapeutic strategies for this disorder.” Gynecologic Pain Funding
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A study by Gloria Bachman, M.D., Professor of Obstetrics, Gynecology and Medicine at the University of Medicine and Dentistry of New Jersey, was designed to determine whether vulvodynia is more common in certain age groups and whether there are similarities among women who develop vulvodynia. In addition, Dr. Bachman and her colleagues will assess the benefit of both traditional and new pharmacologic and dietary interventions in diagnosed women. “Our hope is to avoid surgical intervention if at all possible,” says Dr. Bachman. Another goal of this research project is to disseminate educational materials on the symptoms and treatment of vulvodynia to the medical community and women’s health organizations. This is of vast importance because vulvodynia tends to be misdiagnosed and inappropriately treated.
BACKGROUND
Vulvodynia is a painful and poorly understood chronic gynecologic pain disorder in which women commonly experience symptoms of burning, stinging and rawness in the vulva. Most women who have the disorder report painful sexual intercourse, or an inability to engage in sexual relations, and many are unable to exercise or to sit for prolonged periods of time. In the worst cases, victims are bedridden with unremitting burning and/or stabbing pain. Since the medical community has a poor understanding of the condition, women are commonly misdiagnosed with a yeast infection, sexually transmitted disease or dermatologic condition. Women most commonly seek the advise of several physicians (up to as many as seven) before receiving an accurate diagnosis. They are left suffering for months and sometimes years before the condition is properly diagnosed and treated.
The cause of vulvodynia remains unknown. Suspected triggers include: an injury to, or irritation of the nerves that supply input to the vulva; a localized hypersensitivity to candida (yeast); a reaction to an environmental irritants or allergens; and spasm of the muscles that support the pelvic organs. There is no evidence that vulvodynia is caused by infection or that it is a sexually transmitted disease. Most cases of vulvodynia are not cured, but there are a number of treatments that can partially or totally alleviate the symptoms. One of the recommended treatments is the use of antidepressant or anticonvulsant medications that alters the transmission of pain impulses to the brain.
Other therapies include physical therapy, biofeedback and nerve blocks. For some vulvar vestibulitis patients, interferon injections may be helpful. Surgery is recommended primarily for vulvar vestibulitis patients when conservative therapies do not provide relief.
About the NVA
The National Vulvodynia Association (NVA), a non-profit organization established in 1994, began as a small local support group. Today, more than 4,000 patients and health care practitioners throughout the world belong to the organization. The NVA disseminates newsletters written by medical experts, provides support services and physician referrals, and encourages research on the disorder. Its medical advisory board is comprised of clinicians and scientists from diverse medical specialties, including gynecology, dermatology, pain management and physical therapy. For additional information, visit the NVA’s website at www.nva.org
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