National Institutes of Health Host First Symposium on Mysterious Illness Affecting Women
WASHINGTON– Nearly 200 health care practitioners from nine countries gathered at the National Institutes of Health in Bethesda, MD to tackle a baffling women’s health disorder that has just started to gain recognition in mainstream medicine. Gynecologists, urologists, dermatologists, neurologists, and other medical professionals convened April 2-3, 1997 to communicate what is known about vulvodynia (vulvar pain), to agree on medical terminology and to stimulate much-needed research. The symposium was co-sponsored by several institutes at the NIH. “This conference is a good beginning but we still have much to learn about this painful disorder,” said Program Committee Chair Dr. Maria Chanco Turner, dermatologist with the National Institutes of Health and a pioneer in vulvodynia research. “Vulvodynia is to the medical community today what Chronic Fatigue Syndrome was a decade ago. This meeting represents a major breakthrough in establishing vulvodynia as a recognizable medical disorder,” added Phyllis Mate, Executive Director of the National Vulvodynia Association, an advocate of the NIH symposium.
The symposium, held on the NIH campus, began with speakers presenting current knowledge about vulvodynia including epidemiology, pathology, psychological consequences, and related pain conditions. On the second day, the doctors participated in smaller sessions to explore specific subjects such as vaginal ecology, pharmacologic agents, pain mechanisms, and surgery. The symposium concluded with the prioritization of research needs.
Dr. Turner kicked off the meeting by presenting the results of the National Vulvodynia Association (NVA) patient survey. In this self-report survey of 500 women, the average vulvodynia patient was 43 years old and had experienced symptoms for five years. Sixty-four percent of respondents reported having extremely limited sexual relations. Forty-three percent of vulvodynia patients reported having other chronic pain conditions. Dr. Turner added that her research indicated that forty-four percent of patients had pain with intercourse while twenty-seven percent experienced pain after intercourse.
Dr. Benson Horowitz, Clinical Professor of OB/GYN, University of Connecticut Medical School, provided insight into the challenge of differentiating vulvodynia from vulvovaginal infectious disease. “The signs, symptoms and clinical course of acute or chronic candidiasis are identical to vulvodynia. Therefore, it behooves the therapist to rule out infectious and allergic disease before a diagnosis of idiopathic vulvodynia is confirmed,” he told his colleagues.
Since vulvodynia is a diagnosis of exclusion, there are also three major vulvar dermatoses that must be ruled out: lichen sclerosus, lichen planus, and lichen simplex. If there is any uncertainty, a biopsy can confirm the diagnosis of these dermatological conditions. According to Dr. Marilynne McKay, head of dermatology at the Emory Center in Atlanta, these disorders respond to treatment with high-potency steroids whereas vulvodynia does not. “Topical steroids are the mainstay of therapy for vulvar dermatoses, but high-potency steroids should not be used on normal-looking skin because they can induce redness and burning.”
The benefits of vestibulectomy (surgical removal of painful vestibular tissue) in vulvar vestibulitis patients was presented by Dr. Stanley Marinoff of the Center for Vulvovaginal Disorders in Washington, DC. Unlike vulvodynia patients who have constant vulvar burning, vulvar vestibulitis patients have pain primarily upon contact with the vestibule (area immediately surrounding the entrance to the vagina). In Dr. Marinoff’s study of his surgery patients, more than eighty percent reported elimination or reduction of pain following the vestibulectomy.
Several researchers presented studies on pain including the genetics aspects of pain, psychological consequences of chronic pain, and pharmacologic treatment of visceral pain. Dr. Daniel Clauw, Director of Rheumatology at Georgetown University Medical Center in Washington DC, shared information about other pain syndromes including Chronic Fatigue Syndrome, Gulf War Syndrome, and fibromyalgia (diffuse musculoskeletal pain).
Dr. Peter Lynch, dermatologist, University of California-Davis Medical School, summarized the symposium outcomes as follows:
- The International Society for the Study of Vulvovaginal Disease will be asked to redefine vulvodynia to include “the duration of chronicity and the exclusion or inclusion of related features and factors.”
- Regarding the epidemiology of vulvodynia, little is known about its incidence and prevalence. Research is needed to identify risk factors. Randomized, controlled clinical studies should be undertaken using rigorous inclusion and exlusion criteria to obtain a well-defined population.
- A randomized multicenter study is needed to determine the selection criteria for vulvar vestibulitis patients who may be candidates for surgery.
- Laser surgery should not be used on vulvodynia or vulvar vestibulitis patients.
- Audiovisual aids to increase medical community awareness should be developed.
- A working group should be established to enact the above recommendations.
Background on Vulvodynia
Vulvodynia, sometimes referred to as vulvar vestibulitis or pudendal neuralgia, is a painful, yet little understood, chronic gynecological disorder. A patient’s symptoms can include burning, itching, and increased sensitivity to touch in the vulvar area. 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. In the worst cases, victims are bedridden with unremitting burning and/or stabbing pain.
Complicating the pain is the sometimes invisible nature of the condition. Because the visible manifestations of vulvodynia can be non-existent, the chronic yeast infection, a sexually transmitted disease or a dermatological condition. Women afflicted with vulvodynia typically seek treatment from multiple doctors, and it often takes years to obtain an accurate diagnosis. In the meantime, these victims experience unexplained and excruciating physical pain which can result in depression.
The causes of vulvodynia are unknown. Suspected triggers include: an injury to, or irritation of, the nerves in the vulva; a localized hypersensitivity to candida (yeast);a reaction to an irritant or allergen; high levels of oxalate crystals in the urine; and spasms of the muscles that support the pelvic organs. There is currently no evidence that vulvodynia is caused by infection or that it can be sexually transmitted.
At present there is no cure for vulvodynia, but there are a number of treatments that can alleviate the symptoms. One of the recommended treatments is the use of antidepressant or anticonvulsant medication which alters the transmission of pain impulses to the brain. Other therapies include physical therapy, biofeedback, nerve blocks and diet modification. For vulvar vestibulitis patients, alpha-interferon injections are sometimes used. Surgery is recommended primarily for vulvar vestibulitis patients when conservative methods do not provide relief.
In some cases, vulvodynia is associated with disorders such as interstitial cystitis, an inflammatory, ulcerative condition of the bladder, and fibromyalgia, widespread muscular pain. “We believe that the research stimulated by this symposium will shed light on the causes of vulvodynia and its relationship to other disorders,” said Phyllis Mate, Executive Director of the National Vulvodynia Association.
Additional copies of the symposium and NVA brochures are available.
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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