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

Consider Donating to NVA November 27, 2018

Hi ladies!
I’m forwarding this update from NVO:
Please remember the National Vulvodynia Association (NVA) with a donation this holiday season. Our small staff and volunteers work days, nights (and even holidays!) to assist women with vulvodynia. Your donation will help us fund important research on the causes and treatment of vulvodynia.

Today is Giving Tuesday, a global day dedicated to giving back and supporting organizations that have made a difference in your life. This is the perfect day to give to the NVA and make a difference in the lives of women with vulvodynia. You can donate online now at
or mail a check (made payable to the National Vulvodynia Association) to Tamara Matos, NVA Administrator, PO Box 4491, Silver Spring, MD 20914-4491.


Phyllis Mate
NVA President

P.S. If you are no longer an NVA member (or have never been a member), please consider joining or renewing at Patients and health care providers can join and membership dues help fund our research and education initiatives. Health care providers can also join our referral list by contacting Tamara Matos by phone at 301-299-0775 or email at


NVA Study November 13, 2018

Participants Needed for a Study Designed to Evaluate the Efficacy and Safety of Dysport in Vulvodynia Patients.

If you are a woman 18 to 45 years of age who has had vulvodynia for at least 6 months, but for no more than 15 years, and never had a vaginal delivery including attempted vaginal delivery, you may be eligible to participate in this study. Participants must have provoked pain at the vestibule on a Q-tip test. Patients with deep pain during intercourse are not eligible to participate in this study. Participants also cannot have genitourinary conditions which may interfere with the study, previous surgery that according to investigator’s judgement may impact the study outcome (including but not limited to hysterectomy, vestibulectomy, urologic surgery, perianal surgery) or genital trauma or mutilation/cutting.

This study will be conducted in the following locations:
• San Diego, California
• Washington, DC
• Kansas City, Missouri
• Omaha, Nebraska
• New Brunswick, New Jersey
• Bryn Mawr, Pennsylvania
• Nashville, Tennessee
• Seattle, Washington
If you are interested in participating, please email For more information on the study, please go to


Links with Information April 28, 2016

Filed under: Uncategorized — jul @ 12:19 am

Hello, ladies!

It’s been far too long since any of us VVSN moderators have made any updates to this blog. I apologize ! Hopefully most of you are on Facebook and have joined the VVSN page. Hundreds of women on that page are giving great advice & comfort. What a wonderful group we all are, working together!

I ran across a few links that have some recent developments and/or possible helpful bits of information. At least, slowly but surely, more is being done about this horrible condition. It’s still too early to know what specific causes exist, since all vulvas are different!  I hope  you find some helpful information from these links.


University of North Carolina School of Medicine:

Capsaicin for treating VVS?

Vulvar Vestibulits Relief – a website for support






Help NVA Collect Vital Information on Treatment Effectiveness September 15, 2012

NVA is committed to continuing its support of the first National Vulvodynia Treatment Outcomes Registry, because due to a lack of research, women with vulvodynia, as well as their clinicians, have little to no scientific evidence on which to base important treatment choices. Currently as many as 30 different therapies are used to treat vulvodynia, but we don’t know which treatments work for whom. Without the billions of dollars necessary to conduct controlled trials of all of these therapies, the Registry project simply tracks women as they are diagnosed and undergo treatment to collect this vital data. Rather than experimenting with treatments for months to years to determine what’s effective, women and their physicians will be able to use the data generated by the Registry project to know how effective certain treatments are for different vulvodynia subgroups before initiating treatment.

Women age 21 and older may be eligible 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, does not change women’s treatment recommendations, and does not provide free medical care.

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


UCLA Brain Imaging Study June 12, 2012

Filed under: Uncategorized — jul @ 7:06 am
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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

Filed under: Uncategorized — jul @ 8:46 pm
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Well, it’s pretty much basic info, but it might be helpful to someone anyway! Good reminders, too.


NVA Volunteer Opp July 25, 2011

Filed under: Uncategorized — jul @ 7:31 pm

NVA Volunteer Opportunity

The NVA is in need of a person with computer programming experience (i.e., proficient in HTML, Dreamweaver, etc.) to help maintain its web site and e-mail correspondence. If you have experience in this area and would be interested in helping the NVA 5-10 hours per month, please send an email, along with your résumé, to