When Sex Hurts, and No One Can Tell You Why: The Mysterious Condition Called Vulvodynia

Karen Wilson was 16 when she first began feeling the pain. It began out of the blue one day, and it never stopped. She could never figure out why the heavy feeling in her vagina was happening, or how to stop it. Some days the pain was so bad that she couldn’t walk or even get out of bed.

Wilson began going to doctors, but none of them knew what the pain was or how to make it stop. Many people told her it would end after she had children, and one doctor suggested that it was psychosomatic. It wasn’t until her 20s that Wilson was diagnosed with a mysterious condition known as vulvodynia.

Loosely defined as chronic vulvar pain, vulvodynia is characterized by burning, stinging pain in the vuvla, sometimes called the “lips” that surround the opening to the vagina. Vulvodynia is often mistaken for yeast or bacterial infections or as a sexually transmitted infection or disease.

Many patients have had to visit numerous doctors before being diagnosed, and there is no known cure for it. Often, patients are able to find a regimen of treatments to control their pain, but they never arrive at a complete cure for vulvodynia.

The most common symptom of vulvodynia is pain during sexual intercourse, and the condition was first defined in 1880. It is not determined yet exactly what triggers vulvodynia, but a few theories have been tested and proven to be helpful in properly diagnosing the illness. Christiane Northrup’s book Women’s Bodies, Women’s Wisdom lists yeast infections, gynecological surgery, childbirth and sexual abuse as some of the triggers, as well as inflammation in the vestibular gland. Vulvodynia is especially difficult to diagnose because there are almost no physical signs of illness or infection and doctors have to rely on patients’ descriptions of the symptoms. It is a diagnosis of exclusion, because it is only diagnosed when all known causes of symptoms are ruled out.

Along with the physical pain, vulvodynia takes a great emotional toll on the women who suffer from it. It can cause great damage to women’s relationships and self-esteem, and many patients question their psychological well-being and their worth as a female if they are unable to be sexually active. Finding a diagnosis and a cure can also be extremely stressful, because treating vulvodynia is an expensive, long-term (usually life-long) investment. Even diagnosing the illness can be costly for the patient, who may see several gynecologists before being properly diagnosed, and a co-pay for a gynecologist, which is considered a specialist under the majority of health insurance plans, can cost anywhere from $10 to $50 a visit.

The cost of a consultation with a vulvodynia specialist can vary, ranging anywhere from approximately $200 to $800, and the appointments last between one and two hours. And many of these specialists don’t accept health insurance, which often fails to reimburse them adequately for the exceptional amount of time required with a patient in order to effect a positive outcome in a vulvodynia case. Dr. William Ledger, Professor Emeritus of Obstetrics and Gynecology at Weill Medical College of Cornell University, described the situation as “bothering the devil out of him,” when he explained why he accepts very few insurances from patients who have vulvodynia.

According to Ledger, treating a patient with vulvodynia requires a great deal of time and attention from the doctor, and accepting insurance causes the time spent with the patient to be unprofitable for the doctor. He said many gynecologists make the majority of their revenue by seeing and treating numerous patients and performing operations. Simply put, the more patients the doctor sees, the more money the doctor makes.

Wilson has suffered the financial burden of vulvodynia since her diagnosis, adjusting her budget for medical co-pays as well as physical therapy sessions, where the therapist massages and manipulates the pelvic muscles internally and externally. She had a vestibulectomy, a surgical procedure that removes some tissue from the vulvar area, and she has prescriptions for Lyrica and Valium. It is the physical therapy sessions that take the greatest toll on Wilson. Each visit costs $99, which she pays out of pocket, because she has not been able to find a health insurance company that will cover them.

Wilson, who is married and the mother of a ten-year-old boy, was recently laid off from her job. She is covered under her husband’s insurance, but she is concerned about how her current financial situation will affect her health. She has not seen her physical therapist for several months and hopes she will not have to soon, because of the cost.