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

Important Survey from NVA! June 11, 2013

Dear NVA Friend,

 

Over the last decade, there has been a growing recognition of the important role that patients play in guiding the research and development of new treatments for various disorders, including vulvodynia. 
 
Currently, the NVA has several opportunities to communicate the experiences, needs and preferences of women and girls with vulvodynia to federal health agency directors and biomedical industry leaders, and we’d appreciate your help. If you are a woman or girl who has been diagnosed with vulvodynia and has tried at least one therapy, please take 5-10 minutes to complete a brief survey about your treatment experiences and what you consider to be most important in developing new and effective treatments for the disorder.
 
The collected information will be used solely for awareness and educational purposes, and your contact information will not be shared.

  

To complete the brief survey, please visit: https://www.surveymonkey.com/s/3YZ3VTP.

 

Thank you in advance!

 

chris signature  

 

Christin Veasley

NVA Executive Director

 

 

 
Contact Us
 National Vulvodynia Association
PO Box 4491, Silver Spring, MD 20914-4491
301-949-5114 (phone) | 301-299-3999 (fax) | www.nva.org 
Support the NVA
Your support of the NVA’s mission is vital. Founded in 1994, the NVA is the only non-profit organization that serves women and girls affected by vulvodynia, medical professionals who care for sufferers, and scientists who conduct research on the disorder. The organizationdirectly funds critical vulvodynia research, advocates for increased federal funding of vulvodynia research and awareness programs, supports the establishment of vulvar pain clinics, fosters the professional growth of those dedicated to the care and/or research of vulvodynia, develops educational programs for patients and medical professionals, provides supportive services to affected women and works to increase public awareness of vulvodynia. To make a 100% tax-deductible donation, please visit https://www.nva.org/join_ donate_renew.html . For more information, please visit www.nva.org.  
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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

 

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 (www.uclacns.org) 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).

 

 

Ladies and VVS speak out! February 9, 2008

This is from NVA.org email that I received today:

****************

 

Dear NVA Friend,

 

Producers at The Oprah Winfrey Show are working on a possible upcoming show on vulvodynia.

 

If you are a single woman in your 20s or 30s who is worried that you may not be able to get married or have children in the future because of your vulvodynia and/or a non-Caucasian women of any age who is willing to be on the show, as soon as possible, send an email to chris@nva.org with the following information:

 

          Name

          Age

          Ethnicity

          Summary of your history with vulvodynia, i.e., When were you diagnosed?  How many doctors did you visit before receiving a correct diagnosis?  Have any treatments helped you?  Is your vulvodynia better, worse or the same?

          How has vulvodynia affected your ability to pursue a career and/or engage in social activities?  How has vulvodynia affected your sex life, marriage or relationships? 

          Contact information – phone number and email address

          Current photo (attachment)

          Statement that you give NVA permission to forward your contact information to producers at The Oprah Winfrey Show. 

 

Please try to limit your summary to 1-2 paragraphs. 

 

Thanks very much,

 

Chris

 

—-

 

Christin Veasley

Associate Executive Director

National Vulvodynia Association

PO Box 4491

Silver Spring, MD  20914

401-398-0830

chris@nva.org