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NIH releases Research Plan on Painful Vulvar Condition

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Bringing scientists together to help understand and treat vulvodynia

Although it could affect anywhere from 9% to 18% or more of women age 18 to 64 at any time during their lives, there are few definitive answers about vulvodynia—a group of conditions characterized by unexplained pain of the vulva.

To outline research goals aimed at understanding and treating these painful conditions, in early April the NICHD, in collaboration with the NIH Office of Research on Women’s Health (ORWH) and other NIH Institutes and women’s health groups, released the NIH Research Plan on Vulvodynia.

The nature of pain in vulvodynia can be different for different women. Sometimes, the pain is more of a burning or tingling; other times, just sitting can trigger debilitating pain. Other women with vulvodynia experience near-constant pain.

These problems are compounded by the fact that many health care providers are unaware of vulvodynia, and that its diagnosis relies on ruling out other conditions and possible causes of pain. Women typically visit five health care providers before they receive a diagnosis. Likewise, there is no standard course of treatment. Health care providers typically try various options from antidepressants to botulinum toxin type A (Botox) injections to surgery. Such treatments may only work in some women; in others, they can fail to ease pain.

Putting Vulvar Pain Research on the Agenda

There is a great need to understand why vulvodynia occurs in order to develop effective ways of diagnosing and treating it. Despite previous attempts by the NIH to garner research interest in vulvodynia, for instance by offering grant opportunities specifically for its study, much more research remains.  

To encourage further research on the pain conditions, the NICHD sponsored a scientific meeting on vulvodynia in July 2011. Vulvodynia: A Chronic Pain Condition—Setting a Research Agenda brought together a diverse group of more than 80 scientists, clinicians, pain researchers, and patients to examine existing evidence on the basis of the disease and its similarities to and differences from other chronic pain conditions, such as fibromyalgia. Participants discussed the fact that without a fundamental understanding of vulvodynia—its mechanisms, its causes, even its prevalence—developing effective treatments would be difficult.

Meeting participants agreed that the complexity of the disorder may only make it more difficult to study. Even though gynecologists are usually the first to come into contact with the condition through their patients, vulvodynia is not necessarily a purely gynecological problem. Although its exact cause remains unknown, researchers speculate that one or more of the following could cause or contribute to vulvodynia: nerve or muscle damage or injury, inflammation, hypersensitivity and abnormal cellular responses, and genetic susceptibility and factors, to name just a few. Gaining a deeper understanding of vulvodynia will require the combined efforts of gynecologists, dermatologists, pain specialists, and other researchers and health care providers who do not typically interact. It will also require an infrastructure more supportive of this transdisciplinary approach.

Research Plan Priorities

The new plan that emerged from this symposium and from additional efforts, such as interviews with leading scientists, builds on current research efforts and aims to coordinate and prioritize research in the field. Immediate objectives include developing reliable, valid, and standardized measures for diagnosing the disease and for measuring patient responses to treatment, as well as coming to consensus on standard definitions and terminology. Other objectives include taking actions to promote understanding of the physiological basis of the disease, such as increasing interactions with the broader pain research community and fostering collaborations among researchers in various disciplines.

By assessing research gaps, the plan identifies the need for scientists to pursue a range of studies, such as those that may yield a better understanding of how vulvodynia may be related to other pain syndromes and how the condition may respond to various treatments, including drugs or other therapies that are known to reduce or block pain. As the plan explains, additional research is needed on almost every aspect of vulvodynia.

The NICHD collaborated with various other federal, private, and non-profit agencies and organizations to develop and finalize the plan. These include the ORWH, the National Institute of Dental and Craniofacial Research, the National Institute of Neurological Disorders and Stroke, and the NIH Pain Consortium, as well as the National Center for Research Resources, which recently became the new National Center for Advancing Translational Sciences. Patient-focused organizations, such as the National Vulvodynia Association, also played an important role in helping to define the impact of the disease on women and their quality of life.

By setting clear objectives and encouraging collaborations and partnerships, the NICHD and the entire NIH community can focus on answering important questions about this condition, raising awareness about its impact on women’s daily lives, and providing relief to the millions affected.

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Originally posted: May 8, 2012

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