The NVA is seeking women with vulvodynia who live in the United States to participate in a cost of illness survey, which asks questions about lost work hours and out-of-pocket expenses related to having vulvodynia. From a cost of illness survey, analysts can calculate to what extent a particular health condition impacts our economy. It is important for NVA to have this information to convince members of Congress and NIH staff of the great need to increase funding of vulvodynia research.

Participation requires only 3 hours of your time over the next 6 months. With the use of a NVA-supplied calendar, you will keep track of your vulvodynia-related expenses, such as prescription medications, doctor visits and over-the-counter remedies. Participants will anonymously log onto NVA's web site once every four weeks (for six months) to record expenses. Each time you log on, the survey will take 5-10 minutes to complete.

For additional information, or to participate, please visit
http://www.nva.org/costsurvey

Since the introduction of the COMMANDOS® COTTON patch, a number of you have come forward to tell us about the various vaginal, pelvic, and pain conditions that are affecting your lives. It is through you, our customer, that we have been made aware of the silence you have kept because of the humiliation and embarrassment that some of these are causing you.
It is through you, our customer, that we have learned about the slow acknowledgment by the medical community at large that vulvodynia, pelvic pain, and other vulvovaginal afflictions do, in fact, exist and are very real and require medical attention.

We have chosen to add this page to our website to assist in the public awareness and advocacy for treatment to the large number of you who are living with these conditions that do not allow you some of the freedoms in life. Freedoms such as sex without pain, performing any exercise and sport you choose, regular movement, and wearing anything but tight clothing. Many of you have told us how alone you feel. We hope to open the doors for you to meet one another and find new support.

Your discovery of the COMMANDOS® COTTON patch has offered many of you a solution to your underwear problem. Still having the cotton crotch for comfort and protection, and yet nothing binding you or adding to your irritation. And you have led us to the discovery of how our cotton patch is so much more beneficial than just an alternative to thongs and no pantylines.
We invite all of you to share the information here, to send us more that we can post here for you, and to help us build the public awareness of ALL these conditions that no longer need to be kept in silence. It is through your voices that we all can push for more treatments, healthy solutions, and adding to the community for women’s health.

Conditions that are affecting many of you include Fibromyalgia, Interstitial Cystitis (IC), Irritable Bowel Syndrome (IBS), Myofascial Pain Sydrome, Pelvic Endometriosis, Pelvic Floor Dysfunction, previous long-term Pelvic Trauma, Vulvar Vestibulitis (VV), and Vulvodynia.

According to the International Pelvic Pain Society, over 9 million U.S. women between 18 and 50 suffer from chronic pelvic pain at some point in their lives. An estimated 90% of those women also experience sexual pain.

According to NWHRC, “up to 61% of women with chronic pelvic pain receive no diagnosis. ”They are told …“it’s all in their heads.”

In an article by Jane Brody in The New York Times HEALTH section, January, 2008, reported a “recent study by the National health Institute and conducted by Bernard Harlow at Harvard University indicated that as many as one woman in six, or 13 million American women, may suffer from vulvodynia during their lives.”

An estimated 4 to 8 million adult Americans suffer from fibromyalgia, with 90% being women, according to the National Women’s Health Centre, 2004.

These conditions are real. This page is not intended to provide all of the medical information or statistics to prove it. However, here are some resources for you to use to learn more on your own.

The V Book by Elizabeth G. Stewart, M.D. and Paula Spencer
The V Zone by Colette Bouchez
www.healthywomen.org
www.pelvicpain.org (The International Pelvic Pain Society)
www.acog.org (The American College of Obstetricians and Gynecologists)
www.nva.org (National Vulvodynia Association)
www.SecretSuffering.com
www.familydoctor.org

According to Susan Bilheimer and Dr. Robert J. Echenberg in “64 Tips to Relieve Sexual Pain”… (available on www.SecretSuffering.com)

Tip #5. “Wear cotton underwear only and change it twice a day if possible. Cotton is a more breathable material than silk, polyester, etc., so heat and moisture, both of which are breeding grounds for bacteria, aren’t trapped inside. Not sexy? Well, the other half of this admonition is to sleep without underwear at all so your genital area gets to ‘breathe’.”

Tip #6. “Give up wearing thongs. Self-induced ‘wedgies’ can only cause further irritation to those sensitive genital tissues.”

Disclaimer
The views expressed here by TCG are strictly informational and are not intended to diagnose, treat, cure, or prevent any disease. Always consult with your health care professional if you have any symptoms described in this report.