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

 

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.  
 

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

 

Reminder: Facebook April 24, 2012

Reminder:
We have an active group of phenomenal ladies (of all ages, from all over the world) on Facebook!

Vulvar Vestibulitis Support Network (VVSN)

Note: It is for women only. Requests to join will be approved by an administrator. Apparently, the Facebook “rules” are that it can be an open group, closed group, or secret group. The thing is, we want it to be exclusive to the women who want to be in the group & no one else, but we want it to be available to any woman who does a Facebook search to find the group. However – the list of members belonging to the group is not private. Kinda sucks, I know – but that’s the way Facebook has it. I’ve complained!

Julie

 

Your Partner, Your VVS, and You April 1, 2008

I feel like having a partner and vvs is walking an extremely high, terribly thin tightrope. On one hand you want to provide for your partner in your relationship, sexually, emotionally, everyday functioning. However you shouldn’t compromise yourself to do this. If you are feeling particularly down you shouldn’t feel like you “need” to put your own needs aside to please your partner. Like giving blowjobs bc sex isn’t totally possible at the moment. But you don’t want to shut down from your partner 100%.

Unfortunately, just like everything else with vvs, there is no right answer. Every couple will have different issues/complexes surrounding their situation. Talk with your partner, how you feel, tell them about shutting down emotionally during this time. How do they feel about it? Tell them what would make you feel better. Ask them what would make them feel better. Tell them how they could help. (Even in little ways, like doing something with the kids so you can take a hot bath, or taking out the trash – little things like that add up.) Start small, baby steps are the key to making a relationship work with vvs. What is one thing you can do this week that will make one aspect a little better? And then continue the conversation. Update with each other on how it’s going, is it helping? What else would help? And continue baby stepping along.

 

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