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volvodynia: Battle to Increase Awareness of a Painful Vaginal Condition

A national organization combats ignorance about this common condition.

By Adrienne Rayski

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When Christin Veasley was first diagnosed with vulvodynia in 1994, so little was known about the condition that she was told, incorrectly, that she had no treatment options. At the time, many other women suffering from similar pain in the vulva, which is made up of the labia, clitoris, and vaginal opening, were told the same thing.

More than a decade has passed since Veasley's diagnosis, and in that time the number of women with vulvodynia has climbed. Today more than six million women suffer from it, according to the National Vulvodynia Association (NVA), yet educating physicians about the condition and finding appropriate treatments is still an uphill battle.

It is not uncommon for doctors to attribute vulvodynia's symptoms to more widely recognized conditions that can also cause vaginal pain, such as bacterial vaginosis or endometriosis. Because of this, many women with vulvodynia undergo unnecessary treatments; in some cases, women self-treat with over-the-counter medications. Both unnecessary treatment and self-treatment can further irritate the condition's symptoms, which may include burning, a feeling of rawness, difficulty having sex, and overall vaginal pain. Even worse, some women have been told that the pain they are experiencing is "purely mental" and have been referred to a psychologist rather than a physician, according to The Vulvodynia Survival Guide, coauthored by Howard Glazer, Ph.D., and Gae Rock, M.D. The book chronicles the stories of several women who have gone through the trauma of this experience.

In part to combat this lack of awareness, Veasley, shortly after her diagnosis, began volunteering with the NVA, which works to educate doctors about the condition, funds research, and helps women with vulvodynia find treatment. She continues to serve as an advocate for vulvodynia patients after a seven-year personal battle with the condition. In November 2007, Veasley became the NVA's associate executive director. "Some women will accept what they are told, while others won't," she says. "But patients are becoming advocates and are more educated, and they [often] have to do that to get a proper diagnosis."

Still, many women — even those who have found a physician who understands the condition — deal with genital pain for years before finding something that works for them. The treatments offered for vulvodynia range widely — Lidocaine creams, antidepressants, diet and lifestyle changes, and, in severe cases, surgery are just a few of the suggested remedies. Veasley underwent a myriad of unsuccessful treatments before eventually having a vestibulectomy, surgery to remove and replace afflicted vaginal tissue as well as nerve endings in the vagina's entranceway. What works for one woman, however, may not be successful for another, and even if you've had a successful treatment, there's always the possibly of recurrence.

Part of the solution to this treatment-related confusion is to bring vulvodynia to the attention of medical researchers, says Veasley, who is now virtually pain-free and has given birth to two healthy children. This remains a challenge for the NVA, though. "There are so many health conditions competing for funding. How do you determine what gets more or less money [for research]?" she asks. "Because vulvodynia and chronic pain won't kill you, it falls to the bottom of the totem pole. Women's health in general hasn't been given a high priority."

Nevertheless, the NVA continues to make progress in educating medical workers about this condition, teaching doctors how to recognize its signs and symptoms and to be aware of the array of recommended treatment options. In recent years the association has worked with the National Institutes of Health, funded and launched critical research studies through private funding, and visited medical sites across the country to stress the importance of educating doctors about vulvodynia. In October 2007 the association released a free online tutorial for health care professionals titled Vulvodynia: Integrating Current Knowledge Into Clinical Practice.

Even given such efforts, though, Veasley stresses that women need to take the initiative and come forward about the importance of funding research and educating others about vulvodynia as well as other women's health issues. While many women have become proactive about health concerns such as breast cancer, there's still stigma and embarrassment when it comes to the vaginal area, which can cause many women to suffer unnecessarily in silence.

"Twenty years ago, women would never come out and talk about an issue like breast cancer, and ten years ago it was menopause," says Veasley. "But it is necessary for progress. We can't get Congress to take any action until women come forward. The genital area is the last hurdle that we need to cross."

To read more stories about women who suffer from vulvodynia, visit the NVA's The Many Faces of Vulvodynia.

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Guest eminatic

interesting. sex has always been painful for me ONLY around the entrance...and my ex had a pretty small penis. i went to the doctor several times and they kept giving me yeast infection medication...

my ex told me that it was just in my head.

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This is a great article!

There are some reasons for painful sex that are either medical or psychiological. It is very important to find the reason for the pain. Infections are usually the first thought - but are not always the reason. Similarly, those who are told 'it is all in your head' can be easily discouraged and then shy away from sex all together - fearing that they are abnormal.

People who have gone through a trauma (like abuse or rape) can suffer from psychiological issues that can make sex painful. This is cureable with treatment.

Some women have issues with stretching (if their partner is especially large) or with rough sex. There are ways to solve this as well.

I think that we as women HAVE to take responsibility for our sexual health - and this includes knowing that something is abnormal when it comes to our sex life. If you go to a doctor who makes a wrong diagnosis - then GO BACK. If that doctor won't listen, go to another. Don't accept painful sex as the end result - find the answer and get treatment!

Again, great article!

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THIS is what I've been saying I had right before & after I had DD. I spoke with my OB/GYN about it, and she gave me some cream to help it out.

It felt like a dry "patch" of dryness, that felt like it ripped each time we had sex, no matter what we used. Plus, it was always in the SAME spot. Most common in white women too.

The cream my Dr. gave me took care of it, and I haven't had to use anymore of the Rx....but still have some.....just in case!

Thanks for the article!

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