No one knows for sure how many women suffer from this mysterious, traumatic condition, but treatment and support are available.
"I thought I was going crazy," says Jane (not her real name). "At one point, I tried to choose a suicide method."
Jane's nightmare began with a burning sensation she assumed was a yeast infection. Over-the-counter medication seemed to help...for a while. But the searing agony returned, only to surge and ebb over a period of six years.
"I was a happily divorced mother with a good job and a new romance," Jane says. "My future looked so promising. But then...the pain became my life." She was unable to have sex. Her relationship fell apart. Her energy diminished until her job and home life suffered. Desperate, Jane saw six different doctors. Treatments included laser surgery, injection therapy, and hysterectomy. Nothing helped.
"Vulvodynia" refers to chronic pain in the vulva (external female genital area). Jeffrey Jensen, M.D., M.P.H., associate professor, Department of Obstetrics and Gynecology at Oregon Health Sciences University, says it is a very complicated condition with a number of causes.
"Causes are detectable in some cases," Jensen says. "But in other patients, the precise problem can't be determined."
In cases that can't be categorized, an abnormal nerve condition might be to blame. In theory, the pain threshold alters as discomfort intensifies, until the slightest pressure can cause excruciating pain. Other possible causes include dermatologic disorders, autoimmune dysfunction, allergic responses to chemicals, high concentration of calcium oxalate crystals in the urine, genital trauma, and pelvic muscle spasms.
Vulvodynia is usually not associated with cancer. It isn't contagious or the result of poor hygiene.
The Vulvar Pain Foundation estimates that 100,000-150,000 women in the United States suffer from vulvodynia, while the International Pelvic Pain Society says that nearly 15% of all American women aged 18-50 suffer chronic pelvic pain. "We don't have a handle on prevalence," Jensen says. He notes that because of the private nature of the problem, women may be uncomfortable discussing it with their physicians.
He sees females with the condition from age 12 to 92. Without a population-based survey, the "typical patient profile" is just speculation. True vulvodynia can range from mild aching to such torment that wearing underwear becomes torture. In the worst case scenario, a woman may be unable to sit, exercise, have sex, and may become bedridden.
Vivien Hanson, M.D., research investigator and quality control coordinator at the University of Washington School of Medicine NCI Research Study says vulvodynia pain, typically burning or stinging, is located in the external genitals. "Pain must be present for at least six months," she says, "before the diagnosis of vulvodynia is confirmed."
Jensen cautions women not to be overly concerned over occasional pain, citing other causes of sexual discomfort such as inexperience, lack of arousal, and anxiety. "There's a difference between occasional discomfort and chronic pain."
Howard Glazer, Ph.D., clinical associate professor of Psychology in Obstetrics and Gynecology at Cornell University Medical College in New York City, says recognizing the condition is complicated by societal pressures that cause women to be overly discreet about their genitals.
"When I ask patients if their genitals are reddened," he says, "they often reply that they haven't looked." Hanson concurs. "From birth, women get horrible messages about their vulva."
Muddying the diagnostic picture still more is the varying nature of the condition—genitals may or may not be inflamed, symptoms come and go, and lab results may be negative. Patients are sometimes told it's all in their heads. But Hanson says, "This is not a psychoneurotic disease, but it can affect your psyche. Who wouldn't be depressed by these symptoms?"
Long-term commitment to a lengthy diagnosis and treatment process is imperative. Improvement often takes weeks or months. Jensen says, "Chronic vulvar complaints don't develop overnight and are rarely cured in one visit."
Treatment options include:
- Steroid creams
- A low-oxalate diet
- Dermatologic treatments
- Physical therapy
- Topical painkillers
- Injection therapy
- Surgery to remove inflamed tissue (only considered as a last resort)
Drastic measures may backfire, Hanson cautions. She believes some treatments, such as laser surgery, interferon injections, and therapy for wart virus may actually cause vulvodynia in some cases.
Jensen notes that most individuals get better with time, but "anyone with this chronic condition could benefit from support such as a sexual therapist experienced with vulvar pain to help with relationship issues."
Biofeedback is frequently prescribed. "Most vulvodynia patients have pelvic floor problems," says Glazer, a pelvic floor muscle expert. In response to pain, muscles spasm. Dysfunctional muscles prevent tissues from healing due to diminished blood flow. Using a vaginal sensor attached to a biofeedback instrument, Glazer assesses and retrains muscles through a technique called the Glazer Protocol.
Glazer's biofeedback regimen has no side effects and boasts successes documented in peer-reviewed journals: "About 50% of patients become asymptomatic after treatment, while average reduction in self-rated pain is 83%." Patients are required to use the machines at home for twenty minutes twice a day for an average of nine months.
One caution: "Beware! Lots of people offer biofeedback," Glazer says. "No license is required. Old equipment may be used or techniques that haven't been proven effective." Glazer posts a list of vulvodynia specialists knowledgeable about the Glazer Protocol on his Web site (see Resources below).
Find a doctor experienced in vulvodynia who will listen seriously to your concerns. A support group can ease feelings of isolation (see Resources below).
Jensen notes that most individuals improve with time and support. "Don't write off your sexual life or your ability to have children. With proper attention you can, at the very least, get symptoms controlled to a manageable level in order to live your life fully."
After consulting six doctors during six painful and frustrating years, Jane found a vulvodynia specialist who diagnosed and treated cyclic vulvovaginitis. Eventually, she was able to taper off medications. She's had no symptoms for more than fifteen months.
Recommendations to ease the pain of vulvodynia:
"Treat your vulva as you would your face," Hanson says.
- Don't wash too often.
- Use very mild soap, or none.
- Pat dry with a soft towel or use a hair-dryer set on cool.
- Oatmeal and tea sitz baths may soothe.
Avoid chemical irritants.
- Use 100% cotton nondisposable menstrual pads.
- Avoid perfumed toilet tissue.
- Never use feminine hygiene spray.
- Don't use deodorant soaps or bubble bath.
- Laundry detergents, fabric softeners, and drying sheets may cause problems. Baking soda might be substituted for detergent.
- After washing underwear, put laundry though another rinse cycle.
- Rinse vulva frequently with plain water.
Avoid friction and promote cooling.
- Don't rub.
- Bicycling may worsen irritation.
- Use physician-recommended lubricants for intercourse.
- Wear white 100% cotton underwear and avoid pantyhose, tights, and tight jeans.
- Don't wear underwear or pajama bottoms at night.