Vulvas get hardly any respect. They are the brunt of bad jokes thanks to an ill-named Swedish car. And as far as medicine is concerned, they’re a forgotten part of a woman’s anatomy. In the United States no less than 200,000 women suffer from vulva pain. This condition used to be called "burning vulva syndrome". Unfortunately, it can last for many years, which causes recurring episodes of strong pain and destroying sexual desire.
Just where is the vulva? Many women talk about their entire genital region as the vagina, but the vagina is only internal and ends at the shiny tissue that surrounds the vaginal opening, or the vestibule. The vulva is the outside area of the female genital area.
Women suffering from vulvodynia can experience such symptoms as persistent pain or burning and itching of the vulva. These symptoms can be so severe that it sexual intercourse is connected with pain that is even incredible to imagine. There is no evident tissue damage, no discharge, no infection, no fungus – shortly speaking, nothing is seen on exam with the exception of chronic inflammation, but nobody knows precisely what the origin of the inflammation is. Moreover, the physicians are not sure what should be treated. For many women this can be frustrating.
According to Elizabeth G. Stewart, MD, co-author of The V Book: A Doctor’s Guide to Complete Vulvovaginal Health, there are various reasons why a woman might spend months or years looking for appropriate treatment without getting relief. Stewart says "The first reason is that all genital pain has been considered to be psycho-sexual for centuries. I’ve seen a lot of women who were told they were mad and have undergone months or years or psychotherapy or sexual therapy. The second reason is that healthcare providers and nurses receive virtually no training concerning all the things that can go wrong with the vulva. We’re educated about yeast infections, and that’s all about it."
Howard Glazer, PhD, claims that “Hearing ‘it’s all in your head’ is perhaps the greatest injustice”. He is a neurophysiologic psychologist specializing in pain management, sexual dysfunction, and electromyographic biofeedback, and is quick to indicate that vulvodynia is not a psychological disorder. "It’s a real, organic disorder. A woman becomes extremely emotional in response to pain that’s interfering with a relevant part of her life. To doctors who do not understand psychological processes, they see flaky women who have nothing wrong with them having painful sex- go have a drink and relax. That’s improper and offensive."
Types of Vulvodynia
There are two major types of vulvodynia. Vulvar vestibulitis syndrome (VVS): it is a painful response to touch or pressure around the vaginal opening. Dysesthetic vulvodynia (DV): it is generalized, unprovoked pain. Vulvar pain can have an effect on women of any age.
In VVS, women experience sharp stabbing pain when being touched at specific spots at the vaginal opening where the major vestibular glands are situated. "When the gynecologist pokes around with a Q-tip, there’s very localized point tenderness," explains Glazer, associate professor of psychology in psychiatry and in obstetrics and gynecology, at Cornell University Medical College in New York.
In DV, that is considerably less common than VVS, the pain is a spontaneous burning sensation, sometimes all over the vulva and even down the legs. "It’s often connected with menopause, therefore there may be a hormonal component," claims Glazer.
Why Is There no Cure?
"Vulvodynia has not been investigated well enough to know the cause precisely, and you can’t find a treatment without knowing the cause," claims Stewart, director of the Stewart-Forbes Vulvovaginal Specialty Service at Harvard Vanguard Medical Associates in Boston. "There has only been concern in the last few years. Lately, the National Institutes of Health (NIH) has taken an interest." Stewart is co-author of an NIH-funded research of 5,000 women at Brigham and Women’s Hospital. In the research, that was published in April 2003 issue of the Journal of the American Women’s Medical Association, 16 per cent of women screened reported histories of unexplained vulvar pain lasting at least three months or even more.
"Those are pretty striking numbers due to the fact that we had assumed the numbers of people were small, maybe fractions of 1 per cent," states Glazer. He and Stewart, who are both the members of the International Society for the Study of Vulvovaginal Diseases, hope that the new numbers will result in more research and an effective treatment.
No "One-Size-Fits-All" Treatment
The specialists claim that among various theories concerning the causes of vulvodynia, the most probable is a response to tissue abnormality, perhaps resulting from infection, irritation, or trauma long after it has been resolved. "I suppose that the majority of people believe that this is chronic regional pain syndrome, or CRPS," claims Glazer. "It was first reported in the Civil War as a result of buckshot wounds." He explains that when soft tissue gets irritated or damaged, the body activates various systems of defense. The tissue becomes inflamed and puffs up like a protective pillow to avoid further contact. New nerve endings develop and become hypersensitive and hence they can detect further contact and withdraw. Blood vessels in the area shut down to prevent potential infection from traveling to the rest of the body. Eventually, muscles go on the defensive, producing spasms in the pelvic floor which decrease blood flow and result in further inflammation.
Glazer claims that treatments reflect the components of the self-protective mechanisms, so anti-inflammatory medications, such as high-potency steroids, antihistamines, or Cox-2 inhibitors are often used. Tricyclics, taht are mainly antidepressant drugs, as well as anticonvulsant medications, often work to relieve pain. Topical nitroglycerine may be used to open blood vessels.
A crucial component of Glazer’s treatment is educating women to do daily, special exercises together with biofeedback to modify the pelvic floor muscles. The patient uses a tampon-like sensing device which is attached to a monitor where it displays a squiggly line that reflects muscle tension. "Nearly 50 per cent of all people we treat recover completely," he claims.
According to Stewart, before a diagnosis of vulvodynia is possible to be made, 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 suggests patients to get rid of sources of irritation, such as tight jeans or horseback riding, and to soothe the vulva with an ice pack or fan and perhaps a topical anesthetic such as Xylocaine. Any disorder that might be the cause of vulvodynia is treated. She uses tricyclic antidepressant drugs and anticonvulsants to control pain.
She also advises patients to visit a physical therapist who understands vulvodynia and can detect old injuries or poorly aligned muscles and treat muscle spasms. "My experience is that we are able to help most people, particularly if we see them early enough," claims Stewart. "I have patients whose pain I haven’t been able to alleviate, and I’ve sent some to pain clinics."
Vestibulectomy is a surgical option that eliminates sensitive nerve endings, however it should be considered only as a last resort, says Stewart. Conservative medical therapy is the preliminary treatment of choice. "Try another opinion. It can be very helpful for correctly selected women, but normally we try medical things first."
Don’t Give Up Sex
Pain reduces sexual desire and may also result in the fear of sex due to the chronic pain. Many women stop having sex altogether, depriving themselves of pleasure and putting relationships at risk. The pain from vulvodynia can also bring about spasm of the muscles in the area of vagina making sex penetration more complicated for a woman’s partner. "Many husbands and partners are very understanding, however sometimes you see marriages break up," explains Stewart. "Vulvodynia really can destroy your life."
She and Stewart encourage women to engage in nonpenetrative sex. "For the majority of patients, the clitoris does not hurt," says Glazer, who prefers to see patients together with their partners. "They can still stay quite intimate by having oral sex."
Where To Find Help
"If a woman’s gynecologist does not know about this stuff, she must get on the phone and find the most competent person she can. Call a physician’s office and ask the nurse whether they see a lot of vulvar problems and if they know what vulvodynia is. Sometimes university medical settings have fairly sophisticated care."
"Getting satisfactory diagnosis and treatment is very difficult in face of the lack of education and the overwhelming mystique that it’s in women’s heads," claims Stewart. "You have no choice but to take charge of your own health in order to receive treatment."
