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.  
 

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 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

 

Study – Seeking Participants in TN

The University of Tennessee Health Science Center (Memphis) is looking for women to take part in a Multicenter Controlled Trial of Gabapentin for Vulvodynia. Women with vulvodynia between the ages of 18 and 50 may be eligible to participate in this clinical research study that seeks to determine the effectiveness of Gabapentin-ER in relieving symptoms associated with Provoked Vestibulodynia (PVD, also known as “vulvar vestibulitis” or “vulvodynia”). Gabapentin is approved for the treatment of neuropathic pain and may be effective in treating pain in other conditions, such as PVD. All participants will receive the study medication and placebo treatment (or inert substance) will be used. Participation is voluntary. The research study involves 7 visits over an 18-week period and participants will be asked to keep an electronic daily diary to record pain levels.

Contact: To learn more about this study, or to participate, please contact Dr. Michelle Washington by phone (901-448-1500) or email (mwashi10@uthsc.edu).
Principal Investigator: Candace Brown, PharmD
Website: http://www.hopeformypain.org/

 

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

 

Provide Hope to Others by Sharing Your Story April 23, 2012

The NVA is looking for women who’d like to share their stories in future issues of our printed newsletter, NVA News. There are many different types of vulvodynia and no one treatment(s) works equally well for all women. As such, rather than detailing the specifics of the treatment(s) received, we wish to focus more generally on how receiving vulvodynia treatment has impacted women’s health and quality of life. Our goal in sharing these testimonials is to provide hope and encouragement to women during their treatment process.

Please limit your response (max of 750 words) to one or more of the following topics.

How has your journey in receiving treatment for vulvodynia improved your physical and emotional health, your overall quality of life and/or relationships with your partner, family members and friends?

What have you learned (in general and about yourself) through this process?

If your vulvar pain is not completely resolved with treatment, what coping mechanisms do you utilize to remain hopeful?

Are there any unexpected positives that you’ve gleaned through your journey?

Based on your experiences, what helpful/hopeful advice would you give to a woman who is newly diagnosed with vulvodynia and starting a treatment regimen?

Please send your submission to Cristina Shea by e-mail (cshea@nva.org).

In your email, please state how you would like to be identified in the newsletter (e.g., anonymous, full name, first name and last initial only).

If you are willing to have your picture printed along with your story, please attach a high-quality photo of yourself to the e-mail.

 

New Book Available March 12, 2011

From: National Vulvodynia Association
Subject: New Book Available
Date: Wednesday, March 9, 2011, 9:47 AM

When Sex Hurts: A Woman’s Guide to Banishing Sexual Pain, written by Drs. Andrew Goldstein, Caroline Pukall and Irwin Goldstein, is now available. It includes up-to-date information on vulvodynia and other pelvic/urogenital disorders that can cause painful sex, as well as valuable advice on how you can advocate for yourself, obtain the best possible medical care and improve your quality of life.

You can help the NVA by purchasing the book from Amazon through NVA’s web site. Just click on the book cover located at http://www.nva.org/book_list.html, proceed with your purchase and Amazon will donate a percentage of your total purchase price to the NVA. Additionally, the authors are generously donating 25 percent of book sale proceeds to the NVA!

 

From NVA: Vulvodynia Treatment Registry Now Enrolling Women in AR, CO, FL, DC October 12, 2010

Vulvodynia Treatment Registry Now Enrolling Women in Arkansas, Colorado, Florida and Washington DC

In 2009, the NVA funded the first Vulvodynia Treatment Registry to gather data on the efficacy of different vulvodynia treatments. The project has now been expanded to five sites in Arkansas, Colorado, Florida and Washington DC.

If you are between the ages of 20 and 45 and suffer from vulvodynia, you may be eligible to participate in this study. This study does not provide free medical care and treatment. Participation is voluntary, does not include any experimentation and will not change your treatment recommendation. Women are given a thorough gynecological examination, and after the investigators determine the most appropriate course of treatment, participants complete questionnaires to determine its effectiveness. Two months after starting a new treatment(s), women undergo a second gynecological examination to measure treatment progress.

To read more about the Registry project and its investigators, please visit NVA’s web site. To speak to a Registry coordinator, or to participate in the following states, please contact:

Orlando, Florida
Lilia Portila
407-303-2721, lilia.portilla@flhosp.org

Little Rock, Arkansas:
Christina Hutchinson
501-686-6799, cmhutchison@uams.edu

Washington, DC:
Hillary Tolson
202-887-0568

Denver, CO:
Jill Zika
303-602-9069

Health care providers who would like to obtain Registry flyers to distribute to their patients should contact Ms. Portilla.