Vulvas get little respect. They're the brunt of bad jokes, thanks to an ill-named Swedish car, and medically they're a forgotten part of a woman's anatomy. In the U.S. at least 200,000 women suffer from vulva pain. A condition once called "burning vulva syndrome" it can last for years, causing repeated episodes of severe pain and destroying sexual desire.
Just where is the vulva? Many women refer to their entire genital region as the vagina, but the vagina is internal and ends at the shiny tissue that surrounds the vaginal opening, or the vestibule. The outside of the female genital area is called the vulva.
For women with vulvodynia, symptoms could include persistent pain or burning and itching of the vulva. The symptoms can be so severe that it makes sexual intercourse agonizing. There's no apparent tissue damage, no discharge, no infection, no fungus -- in short, nothing is seen on exam except chronic inflammation, but no one knows exactly what the inflammation is from and doctors aren't sure what to treat. This can be frustrating to many women.
For a couple of reasons, a woman might spend months or years seeking treatment without getting relief, says Elizabeth G. Stewart, MD, co-author of The V Book: A Doctor's Guide to Complete Vulvovaginal Health. "The first reason is all genital pain has been regarded as psycho-sexual for centuries. I've seen an awful lot of women who were told they were crazy and have undergone months or years or psychotherapy or sexual therapy. The second reason is physicians and nurses receive virtually no training regarding all the things that can go wrong with the vulva. We're taught about yeast infections, and that's about it."
Hearing "it's all in your head" is probably the greatest injustice, says Howard Glazer, PhD. He's a neurophysiologic psychologist who specializes in pain management, sexual dysfunction, and electromyographic biofeedback, and is quick to point out that vulvodynia is not a psychological disorder. "It's a real, organic condition. A woman becomes emotional in response to pain that's interfering with an important part of her life. To physicians who don't understand psychological processes, they see flaky women who have nothing wrong with them having painful sex -- go have a drink and relax. That's inappropriate and insulting."
Types of Vulvodynia
There are two main types of vulvodynia. Vulvar vestibulitis syndrome (VVS) is a painful response to touch or pressure around the vaginal opening. Dysesthetic vulvodynia (DV) is generalized, unprovoked pain. Vulvar pain can affect women of any age.
In VVS, women feel sharp stabbing pain when touched at specific spots at the vaginal opening where the major vestibular glands are located. "When the gynecologist pokes around with a Q-tip, there's very localized point tenderness," says Glazer, associate professor of psychology in psychiatry and in obstetrics and gynecology, at Cornell University Medical College in New York.
DV, which is far less common than VVS. The pain is a spontaneous burning sensation, sometimes all over the vulva and even down the legs. "It's often associated with menopause, so there may be a hormonal component," says Glazer.
Why Is There no Cure?
"Vulvodynia hasn't been studied well enough to know the cause, and you can't find a cure without knowing the cause," says Stewart, director of the Stewart-Forbes Vulvovaginal Specialty Service at Harvard Vanguard Medical Associates in Boston. "There's only been interest in the last few years. Recently the National Institutes of Health (NIH) have taken an interest." Stewart is co-author of an NIH-funded study of 5,000 women at Brigham and Women's Hospital. In the study, reported in the April 2003 issue of the Journal of the American Women's Medical Association, 16% of the women screened reported histories of unexplained vulvar pain lasting least three months or more.
"Those are pretty striking numbers because we'd assumed the numbers of people were small, perhaps fractions of 1%," says Glazer. He and Stewart, who are both members of the International Society for the Study of Vulvovaginal Diseases, are hopeful that the new numbers will lead to more studies and a cure.
No "One-Size-Fits-All" Treatment
The experts tell WebMD that among the many theories about what causes vulvodynia, the most likely is a response to tissue abnormality, possibly caused by infection, irritation, or trauma long after it's been resolved. "I think most people believe this is chronic regional pain syndrome, or CRPS," says Glazer. "It was first noted in the Civil War as a consequence of buckshot wounds." He explains that when soft tissue gets irritated or damaged, the body activates a number of defenses. The tissue becomes inflamed and puffs up like a protective pillow to prevent further contact. New nerve endings grow and become hypersensitive so they can detect further contact and withdraw. Blood vessels in the area shut down to prevent possible infection from traveling to the rest of the body. Finally, muscles go on the defensive, producing spasms in the pelvic floor which reduce blood flow and produce further inflammation.
Glazer says treatments reflect the components of the self-protective mechanisms, so anti-inflammatory drugs, such as high-potency steroids, antihistamines, or Cox-2 inhibitors are often used. Tricyclics, which are mainly antidepressants, as well as anticonvulsant drugs, often work to relieve pain. Topical nitroglycerine may be used to open blood vessels.
A key component of Glazer's treatment is teaching women to do daily, specific exercises along with biofeedback to modify the pelvic floor muscles. The patient uses a tampon-like sensing device which attaches to a monitor where it displays a squiggly line that reflects muscle tension. "About 50% of the people we treat get completely better," he says.
Before a diagnosis of vulvodynia can be made, Stewart says other causes of vulvar pain or painful intercourse must be ruled out. These might include infections, such as yeast or herpes; trauma, such as sexual assault; systemic disease, such as Behcet or Crohn's disease; precancerous conditions; irritants, such as soaps or douches; and skin disorders, such as dermatitis or psoriasis.
She advises patients to eliminate sources of irritation, such as tight jeans or horseback riding, and to soothe the vulva with an ice pack or fan and possibly a topical anesthetic such as Xylocaine. Any condition that might be causing vulvodynia is treated. She uses tricyclic antidepressants and anticonvulsants to control pain.
She also sends patients to a physical therapist who understands vulvodynia and can detect old injuries or poorly aligned muscles and treat muscle spasms. "My experience is we can help most people, especially if we see them early enough," says Stewart. "I do have patients whose pain I haven't been able to improve, and I've sent some to pain clinics."
Vestibulectomy is a surgical option that removes sensitive nerve endings but should be considered only as a last resort, says Stewart. Conservative medical therapy is the initial treatment of choice. "Get another opinion. It's very helpful for properly selected women, but usually we try medical things first."
Don't Give Up Sex
Pain destroys sexual desire and can also lead to the fear of sex because of the chronic pain.Many women give up sex altogether, depriving themselves of pleasure and putting relationships at risk. The pain from vulvodynia can also lead to spasm of the muscles around the vagina making sex penetration harder for a woman's partner. "Many husbands and partners are very understanding, but sometimes you see marriages break up," says Stewart. "Vulvodynia really can wreck your life."
He and Stewart encourage women to engage in nonpenetrative sex. "For most patients, the clitoris doesn't hurt," says Glazer, who prefers to see patients accompanied by their partners. "They can still remain quite intimate by doing oral sex."
Where To Find Help
"If a woman's gynecologist doesn't know about this stuff, she needs to get on the phone and find the most savvy person she can. Call a doctor's office and ask the nurse if they see a lot of vulvar problems and if they know what vulvodynia is. Sometimes university medical settings have fairly sophisticated care."
"Getting adequate diagnosis and treatment is very hard in face of the lack of education and the overwhelming mystique that it's in women's heads," says Stewart. "You have to take charge of your own health in order to get treatment."
