Personal Health

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

Imagine a choice between no intercourse or sex with unbearable pain. Then imagine that no doctor knows how to fix it. That's the world occupied by women with 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.

Yamalis Heranandez had always thought the pain she experienced was psychological, crediting it to religious guilt and thinking the pain would disappear after her wedding. When she was diagnosed with vulvodynia, she was relieved and upset, because she had thought if it was something psychosomatic, she would be able to cure it through counseling.

Hernandez has tried taking a variety of medicines, including lidocaine, desipramine and Neurontin and after a year of failed attempts to ease the pain, had a vestibulectomy, which helped her condition. She also has experienced relief from acupuncture treatments, light therapy, and appointments with a psychotherapist to help with the intense depression she fell into after being diagnosed.

“I felt very guilty not being able to have sex with my husband,” she said. “I always thought he was going to leave me, thinking, ‘I am such a drag to be around. I’m so ugly. Why would anybody ever look at me? I don’t even feel like a woman.’ I felt like a disgusting person, and I felt bad he had to be around me.”

Hernandez credits the psychologist with helping her trust her relationship and said if she hadn’t gone to therapy sessions, she doesn’t think she would still be married.

The first time Ledger sees a patient with vulvodynia, he spends about 30 minutes with her, compared to the 10 he typically spends with a patient. That visit, uninsured, costs the patient $350, and if the patient chooses to have an additional gene test done in order to help diagnose the cause for vulvodynia, an additional $190.

“These women have a condition that takes a lot of time and isn’t anything that can fit under one heading,” he said. “It’s a chronic condition, and for most of them it’s never over. Trying to figure out what’s going on with each individual patient and the best combination of approaches that work with them takes a lot of time. And that’s kind of contrary to the way most ob-gyn doctors work.”

The difficulty of treating vulvodynia discourages many doctors from approaching it, according to Ledger, who described the situation as very discouraging.

“These women take a long, long time to evaluate,” he said. “You may have a lot of false starts with them. You have to keep in communication with them. Basically, ob-gyn people don’t want to deal with chronic problems. They don’t want to deal with something that’s not going to go away.”

Neither Wilson’s and Hernandez’s surgeries completely cured the symptoms the women were experiencing. They still have to see doctors and purchase numerous prescriptions as well as pursue alternative treatments that may not be insured.

One year and four months after she was married, after the surgery and several months using dilators, devices used to stretch or enlarge her vaginal opening, to help control her muscle spasms, Hernandez was able to have sex with her husband for the first time. However, her condition is not cured and she still lives with vulvodynia every day, using lidocaine to ease the pain of sexual intercourse and, for a short period of time, she attended physical therapy sessions to strengthen her pelvis.

Following her surgery, Hernandez experienced great relief from acupuncture treatments, combined with light therapy. But she isn’t able to see her acupuncturist any longer, because she changed health insurances and the cost of the treatments tripled, going from $20 to $60.

Even after stopping acupuncture treatments, Hernandez estimates that she has spent several thousand dollars trying to treat vulvodynia, even though her surgery was covered by her health insurance. When asked to list her medical expenses, she mentioned acupuncture appointments, massage sessions, several dilators which were $150 each, and medical co-pays, as well as over the counter medications to treat yeast infections, which vulvodynia patients are especially prone to. Her psychotherapy treatments were on a sliding scale of $40 per visit, and her physical therapy appointments were $20 twice a week. She also had to change her wardrobe so she could wear more skirts and dresses, because pants were too uncomfortable.

She said the cost of her treatments was a huge burden on her life, and she felt guilty going to her therapist, because it was an “extra” cost in her budget. Her total estimated cost is even less than it would be for other women in her situation, because Hernandez was participating in a research study under which she received some medications and tests free of charge.

Being covered by health insurance is absolutely necessary for any patients with vulvodynia, despite the fact that many specialists do not accept health insurance for patient visits. The additional costs of treating the condition, such as prescription painkillers, are even more expensive if the patient is uninsured. The surgical cost of a vestibulectomy can total up to several thousand dollars out of the patient’s pocket, and an uninsured prescription of a painkiller can be anywhere from $30 - $100.

“If you don’t have health insurance in this country, it’s not a good thing,” Wilson said. “There’s no way around that. If you don’t have health insurance, you can call any old doctor and the first thing they ask you is what kind of insurance you have.”

Ledger said his situation is an exception to the rule in the medical profession in that he is a tenured professor and used to be the chairman of the Obstetrics and Gynecology department. The majority of his payment comes from teaching and research, and his paycheck will not decrease if he does not charge more money. He said if his income was dependent on treating patients, he would charge much more per visit.

While Ledger is committed to his work and able to treat women for a lower cost than other specialists, he is concerned about the future of researching and treating vulvodynia, saying he did not see many students that indicated interest in treating this kind of condition. He credited the lack of interest partly to the debt load shouldered by recent graduates of medical school.

According to the American Medical Association, the average debt carried by a medical school graduate has risen faster than the consumer price index for the past twenty years, and the tuition has been growing faster than the CPI. The average debt of the graduates of 2007 was $139,517 and had increased by 6.9 percent since the previous year. Three quarters of medical school graduates have debt of at least $100,000 and 87.6 percent carry outstanding loans.

“There’s little interest in treating vulvodynia. It’s time consuming, and the monetary awards don’t match the effort required to treat the patient properly,” Ledger said. “You make money by delivering babies and doing operations…I happen to think our whole medical system stinks.”

Wilson’s physical therapist said her therapist sees many women who have the same problem as her.

“That’s a bit of concern in and of itself,” Wilson said. “You wonder how many women are struggling with this.”

Wilson’s concern is shared by many other patients and professionals in the medical community. The National Vulvodynia Association was founded in 1995 by five patients who lived in the Washington DC area, to provide emotional, medical and financial support for women suffering from this condition. Currently about 5000 people, both patient and medical providers, are donors to the NVA, which is administering a Cost of Illness survey about vulvodynia. Ten studies on the condition have been funded so far, but its economic impact, such as out-of-pocket expenses and work hours lost by the patient, has not been considered yet and will be a part of the survey.

The survey is a step in the right direction of the change that is so badly needed in the American health care system. However, despite the obvious problems that vulvodynia presents for both patients and practitioners in the health care system, no one seems quite sure how to bring about this change. Health care reform has been discussed widely as of late, but even if the reform bill is passed, Ledger does not predict it will have great impact on the medical community’s approach to vulvodynia.

“With the pressure on doctors and the concern about economics and the cost of malpractice, we have endangered the system here,” Ledger said. “It needs to be changed badly, but I think it’s going to be hard to accomplish it.”

 

 

Carey Purcell is a 2006 graduate of Emerson College, where she studied Print and Multimedia Journalism and Writing, Literature and Publishing. She works as an editorial assistant at an online publishing company in New York. On December 11, 2007, she was declared cancer-free.