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

Clinical Trial Seeking Women in AZ, CA, DC, PA & NY September 22, 2012

A Randomized, Double-Blind, Placebo-Controlled Research Study to Evaluate a
Novel Vulvar Cream Containing Cutaneous Lysate for Provoked Vestibulodynia

Women between the ages of 20 and 55 who are not pregnant or breastfeeding may be eligible to participate in this study. Women must experience pain with tampon insertion and/or intercourse that affects their sexual function, and practice a reliable form of birth control. Those with a history of diabetes, heart disease, HIV, hepatitis B or C, or menopause are not eligible. Women must be able to attend two clinic visits, plus two telephone interviews, and complete all questionnaires in English over the course of the 12-week study. The study cream and other related study tests will be provided at no cost.

Participating Centers:

The Centers for Vulvovaginal Disorders (Washington, DC)
Contact Hillary Tolson
Principal Investigator: Andrew T. Goldstein, MD

Pelvic & Sexual Health Institute (Philadelphia, PA)
Contact Elizabeth Elias, CCRC
Principal Investigator: Kristene Whitmore, MD
Co-Investigator: Susan Kellogg-Spadt, PhD, PA-C

San Diego Sexual Medicine (San Diego, CA)
Contact Margaret Carr
Principal Investigator: Irwin Goldstein, MD

Arizona Vulva Clinic (Phoenix, AZ)
Contact Gabrielle Rodriguez
Principal Investigator: Joseph Brooks, MD

New York Center for Women’s Health Research (New York, NY)
Contact Lauren Pellegrino, WHNP-BE
Principal Investigator: Kenneth A. Levey, MD


UCLA Brain Imaging Study June 12, 2012

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UCLA Brain Imaging Study


Women between the ages of 18 and 55 who have been diagnosed with Provoked Vestibulodynia (formerly vulvar vestibulitis syndrome), or are experiencing chronic pain at the vaginal opening with/without intercourse may be eligible to participate in this study. Women must be right-handed and cannot be pregnant. Participation involves two visits over approximately 2-4 weeks.  Dr. Emeran Mayer at the UCLA Center for Neurobiology of Stress ( will conduct brain imaging tests (fMRI) to understand how chronic vulvar pain may affect the brain’s activity and structure.  Participants can earn up to $75 and will receive a picture of their brain.


For more information, please contact Dr. Andrea Rapkin (310-825-6963).



WebMD: Chronic Pain April 24, 2012

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Well, it’s pretty much basic info, but it might be helpful to someone anyway! Good reminders, too.


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


Vagina Updates October 2, 2007

Latest news:

We will soon be finishing our business cards and NVVO brochures. I am going to set up a landline (or is it LAN line??) at my new apartment when I move on Oct 12. It will be our official NVVO phone, woo woo! Katie E is totally awesome, helping me figure out this Blog site stuff. Katie S is in New York, and WOW what an experience for her! She’ll miss the Siren Nation event though. 😦  Sarah…where is Sarah? She’s been busy with the paperwork and filings for our group. I’m discussing our brochure layout with my friend Sara who is a graphic designer. Gotta get this stuff squared away! And once the basics are done (registered everywhere we are supposed to be, getting business cards and brochures, etc)…we will be ROLLIN’!! 

This is absolutely fantastic. We are gonna make a difference. We already are, actually!