Vulvar Vestibulitis Support Network

the chronicle of broken Vaginas, what we've done to try and fix them, and how we plan to save the World

Help NVA Collect Much-Needed Information on Treatment Effectiveness April 23, 2012

Help NVA Collect Much-Needed Information on Treatment Effectiveness

First Multi-Site Treatment Registry to Enroll Additional 350 Women in 2012

NVA is committed to continuing its support of the first National Vulvodynia Treatment Outcomes Registry, because due to a lack of research, clinicians and patients have little to no scientific evidence on which to base important medical decisions. The only way that women will ever be informed of the treatment(s) proven effective for their specific vulvodynia subtype – thereby decreasing the time between diagnosis and initiation of effective treatment – is through this type of research! Please help us collect this vital data to help women who are currently suffering as well as those who will come after us.

Over the next 10 months, an additional 350 women age 21 and older will be able to participate in this important study. Registry investigators collect a wealth of neurological, infectious, immunological and genetic data from participants at several time points after initiating treatment – all of which will be correlated to the effectiveness of different vulvodynia therapies. This study will not only lead to the identification of factors that can predict treatment effectiveness, but will help us understand the underlying mechanisms associated with different vulvodynia subtypes. Participation is voluntary, does not include any experimentation and does not change women’s treatment recommendations.

To speak to the Registry’s Research Coordinator Katy Capote about participating at any of the sites, please call 407-303-2721 or send an email to

Medical professionals interested in obtaining Registry flyers to distribute to their patients should also contact Ms. Capote.

To read more about the project, including information on the Registry Investigators, please visit NVA’s web site.

Registry sites are located in:

Little Rock, Arkansas

Los Angeles, California

Denver, Colorado

Fort Lauderdale, Florida (coming soon)

Orlando, Florida

Annapolis, Maryland

New York City, New York (coming soon)

Akron, Ohio

Pittsburgh, Pennsylvania (coming soon)

Washington DC


One Response to “Help NVA Collect Much-Needed Information on Treatment Effectiveness”

  1. S. Grasty Says:

    For the past 8 years since entering menopause, I had been experiencing vulvar pain especially during intercourse but also during bathing or any activity impacting my vaginal area. I recently read a website post recommending evening primrose oil – it has changed my life and saved my marriage. I rub the oil from two caplets of the oil on my vulvar area daily and experienced relief almost immediately. I could not believe the difference it made – sex is once again a pleasure and I feel like a new woman.

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