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 https://www.nva.org/make-a-difference/donate/
or mail a check (made payable to the National Vulvodynia Association) to Tamara Matos, NVA Administrator, PO Box 4491, Silver Spring, MD 20914-4491.

Sincerely,

Phyllis Mate
NVA President
pmate@nva.org

P.S. If you are no longer an NVA member (or have never been a member), please consider joining or renewing at www.nva.org/join. 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 admin@nva.org.

 

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 clinical.trials@ipsen.com. For more information on the study, please go to https://clinicaltrials.gov/ct2/show/NCT03598777

 

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
202-887-0568
Principal Investigator: Andrew T. Goldstein, MD

Pelvic & Sexual Health Institute (Philadelphia, PA)
Contact Elizabeth Elias, CCRC
215-863-8100
Principal Investigator: Kristene Whitmore, MD
Co-Investigator: Susan Kellogg-Spadt, PhD, PA-C

San Diego Sexual Medicine (San Diego, CA)
Contact Margaret Carr
619-265-7691, information@sdsm.info
Principal Investigator: Irwin Goldstein, MD

Arizona Vulva Clinic (Phoenix, AZ)
Contact Gabrielle Rodriguez
602-265-1112
Principal Investigator: Joseph Brooks, MD

New York Center for Women’s Health Research (New York, NY)
Contact Lauren Pellegrino, WHNP-BE
649-290-9560
Principal Investigator: Kenneth A. Levey, MD

 

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 katerina.capote@flhosp.org.

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