Vulvodynia: Chronic, unexplained pain in the vaginal area and painful sex

They say that even when sex is bad, it's good. But what if sex isn't just bad, but painful? Sex is painful for thousands of women who suffer from a condition called vulvodynia. According to a 2003 study from researchers at Harvard University, about one woman in six will experience this chronic vulvar pain at some point in their lives. Are you one of them? Read on for more information on this painful, emotionally debilitating condition.
Vulvodynia

More than just a “depressed vagina”

Just as “Sex and the City’s” Charlotte York proclaimed in season four to be suffering from a "depressed vagina," women should be aware that they are not alone in experiencing vulvodynia.

“I like to think to that the women’s health movement has made women more comfortable talking about parts of their body than they were years ago,” says Vivian W. Pinn, MD, director of the Office of Research on Women’s Health. “But still, many are a little uncomfortable talking about the vaginal area. They might not even know the term vulva, and may often refer to it as the ‘pain down there.’”

Last year, Dr. Pinn and colleagues launched a vulvodynia awareness campaign with the goal of educating healthcare providers and all women about the condition.

What is Vulvodynia?

Vulvodynia is unexplained pain or discomfort in the vulva area that typically strikes women between ages 18 and 25 and lasts more than three months, according to the Office of Research on Women’s Health, which is part of the National Institutes of Health.

What are the symptoms of vulvodynia

Symptoms include chronic burning, stinging, knifelike pain, rawness or irritation that comes and goes. The pain can interfere with sex, tampon insertion, and even make wearing undergarments or pants intolerable.

Unbearable pain of vulvodynia

Christin Veasley, 32, first started experiencing vulvodynia symptoms when she was an 18-year-old college freshman. Unfortunately, her nurse practitioner at the time didn’t know enough about the condition to be able to help her.

One day, during the middle of a physics exam, the pain got so bad that Veasley was forced to get up from her desk and hand in a half completed test.

“I walked to my car and drove to the nurse practitioner's office,” Veasley recalls. “I didn’t have any appointment or anything and I was very distraught in the waiting room until [the nurse practitioner] could see me. I just said look, ‘I can’t believe that anyone would live like this.’ It was basically burning all the time. I couldn’t wear pants, I couldn’t sit, I couldn’t concentrate.”

Getting a diagnosis is a relief

Veasley’s nurse practitioner finally diagnosed her and gave her information for the then-newly formed National Vulvodynia Association.

Veasley was eventually able to find a physician with expertise in vulvodynia. But even before that, simply having a name for the problem was already in itself a form of relief, she says.

“Being diagnosed is half of the solution. Once you’ve been diagnosed, you can focus your attention and energy to getting better, instead of trying to figure out what’s wrong,” Veasley says.

Finding a specialist can be difficult

Finding a healthcare provider who knows how to treat vulvodynia is in fact an issue for many women, Pinn says.

“I’ve had several women come to me personally saying, ‘I’ve been going to doctors and no one seems to help me. No one knows what’s wrong, they think it’s just in my head,’” Pinn adds.

Think you may have vulvodynia?

See your primary care doctor or gynecologist, Pinn advises. If your doctor ignores you or doesn’t know how to treat your problem, get a second or even third opinion, she says.

Treatment options for vulvodynia

Treatment options include topical anesthetics, nerve block drugs, physical therapy, or behavioral therapy, Pinn says. Surgery is usually a last resort.

As for Veasley, she tried various treatments for seven years until she finally decided that surgery would probably be the only way to relieve her pain. After undergoing the procedure at age 25, Veasley is today mostly pain free.

“I still very occasionally have some mild discomfort premenstrually but it doesn’t stop me from having intercourse or any sexual activity…for me that’s like a miracle,” she says.

Trust your instincts and be vigilant

Now associate executive director of the National Vulvodynia Association, Veasley regularly reaches out to women who feel hopeless because of their condition.

She says a lot of women are misdiagnosed with a yeast infection, urinary tract infection or bacterial vaginosis. “Trust yourself,” Veasley says. “If you know something is wrong don’t give up. Be vigilant.”

Tips to consider if you think you have vulvodynia

Think you may have vulvodynia? See a healthcare provider and consider these tips from the Office of Research on Women's Health:

1. Be honest. Be open and honest with your partner about your condition, and don't feel obligated to be intimate if it is painful.

2. Change your toilet tissue. Use only white, unbleached toilet tissue.

3. Use cotton feminine products. Buy 100 percent cotton sanitary products.

4. Opt for cotton. Choose cotton underwear.

5. Ditch the hose. Avoid pantyhose and tight clothes.

6. Water is best. Wash the area frequently with water.

7. Don't overwash. Avoid using creams, soaps, douches and deodorants in the area.

To order an information packet on vulvodynia, call the National Institute of Child Health and Human Development Information Resource Center at (800) 370-2943 or visit their website at www.nichd.nih.gov/publications.