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Wednesday, October 24, 2007
NIH Launches Campaign to Raise Awareness of Vulvodynia, a Painful Disorder Affecting Many Women
The Office of Research on Women's Health (ORWH) at the National
Institute's of Health (NIH), in partnership with other federal
and non-federal partners, announced the launch of the "Vulvodynia
Awareness Campaign" on October 24, 2007.
Vulvodynia, also referred to as "the pain down there" or "feminine
pain," is chronic discomfort or pain of the vulva, which is the
area around the outside of the vagina. It is a persistent condition
for which there is no apparent cause and no single effective treatment.
Vulvodynia can have stressful effects on every day life and relationships.
A lack of sufficient consumer and health care provider information
may contribute to a delayed diagnosis and the ultimate long-term
suffering of vulvodynia patients.
Researchers estimate that as many as 18 percent of women will
experience symptoms consistent with vulvodynia. Many women suffer
with unexplained vulvar pain for months — even years — before a correct
diagnosis is made and an appropriate treatment plan is determined.
Studies have shown that almost half of the women with symptoms
chose not to seek treatment, even when these symptoms limited sexual
intimacy. (Bachmann et. al, 2006).
"The time has come to talk openly and directly about vulvodynia — its
symptoms, diagnosis, and treatment — so that the quality of life
of sufferers of this condition can be improved," said Vivian W.
Pinn, M.D., Director, Office of Research on Women's Health, NIH.
There is currently no cure for vulvodynia. But there are treatments
for some of the symptoms. Some current treatments include local
pain relievers (medications), physical therapy, changes in diet,
and drug treatment. Because each woman's symptoms may be different,
no one treatment works all the time or is right for everyone.
The NIH Office of Research on Women’' Health (ORWH) hopes by combining
forces with partners such as advocacy groups, health care practitioners,
research organizations, and federal and non-federal entities, there
will be increased awareness and understanding of this important
medical condition for women. Over the years, ORWH has helped expand
the scope of women's health research. This research and consequent
dialogue have led to better decision-making regarding treatment
options for a wide range of medical conditions. Many issues that
were or may still be considered "sensitive" for women to discuss
with their health care providers resulted too often in women suffering
in silence. For example, breast cancer, menopause, urinary incontinence,
cervical cancer, sexually transmitted infections, and uterine fibroids
are a few examples of conditions that affect women and that only
over recent years have women begun to feel more comfortable discussing
openly. ORWH continues its efforts to bring these women's health
issues into the public arena.
Through the efforts of a collaborative and diverse group of partners,
the campaign will disseminate educational materials to the public
and to healthcare providers, which will include frequently asked
questions, online and print resources, fact sheets, and scientific
Campaign materials are available on the Office of Research on
Women's Health Web site at: http://orwh.od.nih.gov/health/vulvodynia.html.
For print copies of the Vulvodynia Awareness Campaign information
packet, contact the National Institute of Child Health and Human
Development Information Resource Center at 1-800-370-2943 or visit:
The National Women's Health Resource Center also has a number
of consumer-oriented materials on vulvodynia available online at
Speakers at the launch of the Vulvodynia Awareness Campaign included:
- Vivian W. Pinn, M.D., Director for Research on Women's Health;
Director, Office of Research on Women's Health, NIH
- Christin Veasley, Associate Executive Director, National Vulvodynia
- Bernard L. Harlow, Ph.D., Mayo Professor of Public Health,
Chair of the Division of Epidemiology and Community Health, University
of Minnesota School of Public Health & Adjunct Professor of Epidemiology,
Harvard School of Public Health
- Hope K. Haefner, M.D., Director, University of Michigan Center
for Vulvar Diseases
- Candace S. Brown, M.S., M.S.N., Pharm.D., Professor, Departments
of Pharmacy, Obstetrics and Gynecology, and Psychiatry, University
of Tennessee Health Science Center
- Estella Parrott, M.D., M.P.H., Program Director, Reproductive
Medicine Gynecology Program, National Institute of Child Health
and Human Development, NIH
- Nelson L. Adams, M.D., President, National Medical Association;
Chairman, Department of Obstetrics and Gynecology, Jackson North
Medical Center, Miami, FL.
- Elena Rios, M.D., President, National Hispanic Medical Association
- Elizabeth Battaglino Cahill, R.N., Executive Vice President,
National Women’s Health Resource Center
The Office of the Director, the central office at NIH, is responsible
for setting policy for NIH, which includes 27 Institutes and Centers.
This involves planning, managing, and coordinating the programs
and activities of all NIH components. The Office of the Director
also includes program offices which are responsible for stimulating
specific areas of research throughout NIH. Additional information
is available at http://www.nih.gov/icd/od/.
The Office of Research on Women's Health (ORWH), Office of the
Director, National Institutes of Health (NIH) serves as a focal
point for women's health research at the NIH. For more information
about NIH's Office of Research on Women's Health, visit http://orwh.od.nih.gov/.
About the National Institutes of Health (NIH): NIH, the nation's medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.
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Bachmann GA, Rosen R, Pinn VW, et al. Vulvodynia: a state-of-the-art consensus on definitions, diagnosis and management. J Reprod Med. 2006;51(6):447-56.