|
Contact: Phyllis Mate
(301) 299-0775
Fax: (301) 299-3999
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.
Symposium Results
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).
Symposium Recommendations/Outcomes
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
back to Press Releases
|
