JOANNE J. YOUNT, CLIVE C. SOLOMONS, PH.D.,
JOHN J. WILLEMS, M.D., AND R. PAUL ST. AMAND, M.D.
Vulvar pain is not new. (The vulva is the external genital skin of women.) Over 100 years ago, pioneers in gynecology described it as "excessive sensitivity of the nerves supplying the mucus membrane." They warned that surgery would not cure it.
"The sensitive tissue has been dissected off and relief obtained for a time, the hyperesthesia returning, however, as before the operation." — Dr. A. J. C. Skene, Treatise on the Diseases of Women, 1889.
"The vulvectomy did not help. The next month it (pain, itching, and burning during intercourse for 25 years) all came back." — Letter to The Vulvar Pain Foundation, 1997.
Modern-day clinicians have acknowledged that vulvar pain, burning, and dyspareunia (painful sex) often defy attempts at specific diagnosis. They have identified the vulvar vestibule as a primary anatomic site of many complaints.
Many terms have been used to describe persistent burning and sensitivity in vulvar skin not caused by identifiable infection. These include: vulvar dystrophy, vestibular adenitis, focal vulvitis, erythematous vulvitis en plaques, vulvar vestibulitis, and burning vulva syndrome. Vulvar pain is also a primary symptom of such poorly researched and treated diseases as lichen sclerosus, lichen planus, Sjogren's syndrome, and Paget's disease. The name vulvodynia (Greek for "vulvar pain") was coined in the 1980s as an umbrella term for all vulvar diseases, including infections and vaginal atrophy at menopause, conditions which have known causes (etiologies) and are treatable. However, vulvodynia is also used to refer to "a specific condition of unknown etiology," with much resultant confusion.
(Female External Genitalia)
The medical literature focuses almost exclusively on painful sex as the primary presenting symptom of vulvar pain. In real life, women who have the disorder report a complex array of physical symptoms: from itching, stinging, burning, and shooting pains, to hypersensitivity and sensations of dryness or swelling anywhere in the vulvar skin — including the introitus, vestibule, labia minora and majora, and clitoris (Figure 1).
Some women, for example, are unable to wear underwear, tailored pants, or jeans as fabric touching and pulling the skin and pubic hair is uncomfortable, or downright painful. Others can barely even walk because of the hypersensitivity and pain.
A subset of symptoms, anatomically confined to the vulvar vestibule, and painful sex, have been termed "vulvar vestibulitis." The vestibule is an oval area that includes the urethral and vaginal openings. Indeed, many women experience severe pain in the glandular tissue near the openings of the vagina and urethra, which can make sexual intercourse or sitting intolerable. Usually, however, symptoms in the vestibular area are accompanied by symptoms elsewhere; and some women who have pain in vestibular tissue can still engage in sexual intercourse comfortably.
Nevertheless, sexual and marital relations almost invariably suffer from the disorder. Chronic pain of any kind diminishes sexual desire and causes depression. In terms of overall functioning, the loss of sexual activity usually pales beside the needs of women to simply sit, walk, think, sleep, care for their children, and earn a living.
On visual examination, the vulvar skin of vulvar pain sufferers typically looks completely normal, especially to the untrained eye. Barely discernible red dots, when examined with a colposcope (skin microscope), are revealed to be a proliferation of blood vessels. In some cases, the area is highly inflamed, with splits or "paper cuts" in the skin. Occasionally, eroding, highly inflamed sores are seen.
Pathological examination varies in the particulars. However, one universal finding in women who have vulvar pain is chronic inflammation, often designated by pathologists as "mild." Practical Measures to Reduce Vulvar Pain
Treatments to Avoid
A variety of surgical and pharmacological treatments (steroids, antibiotic, antifungal, and antiviral medications) have been tried — with little success. Women have also been treated unsuccessfully with caustic topical agents for human papillomavirus (HPV), a virus that causes warts. These inappropriate agents only cause intensified burning, pain, and ulceration; indeed, such chemical burns can induce the onset of vulvar pain in predisposed individuals. There is no evidence whatsoever that HPV causes vulvar (or any other kind of) pain.
Various pain management therapies and palliatives for chronic pain, such as tricyclic antidepressants, anti-seizure drugs, nerve blocks, and capsaicin, have also been tried; but they generally provide, at best, only inadequate or temporary relief.
As with other bewildering conditions where patients have been poorly served, the inevitable occurred. In 1992, women took the problem into their own hands: They formed a grass-roots organization, The Vulvar Pain Foundation, to end their isolation, disseminate reliable information on treatment effectiveness, and promote scientific research to determine the root causes of this chronic, debilitating disorder.
In 1992, they connected with biomedical research scientist, Clive C. Solomons, Ph.D., former director of research at the University of Colorado Health Sciences Center in Denver, Colorado. He had been studying the biochemistry of women experiencing vulvar pain for six years and had published a representative case study in 1991. He had also developed the beginnings of an effective, scientifically-based treatment.
The ensuing scientific collaboration, along with an explosion of publicity (The New York Times, Voice of America, etc.) catapulted the organization into national and international recognition. Over the past five years, more than 25,000 women experiencing vulvar pain have contacted the Foundation, creating an avalanche of indispensable anecdotal information.
The Vulvar Pain Foundation has attracted many experienced clinicians and interested allied health professionals who have joined with it in accepting the challenge presented by the condition. This is what they have learned as women have come together in support groups, regional research seminars, and preliminary research survey projects.
Many women with vulvar pain symptoms also report urological symptoms: urgency and frequency, bladder or urethral burning, and red blood cells in urine in the absence of infection. This constellation of urological symptoms also fits the diagnosis of interstitial cystitis (IC).
Other typically reported symptoms include rectal itching and burning and frequent bowel movements associated with irritable bowel syndrome; burning mouth and tongue syndrome; and dry eyes and mouth associated with Sjogren's syndrome.
Another disorder frequently diagnosed in women who have vulvar pain is fibromyalgia (formerly known as "fibrositis"). Characterized by tender, sore, stiff muscles, fibromyalgia is usually accompanied by chronic fatigue and a cascade of full body symptoms that coincide with those reported by vulvar pain sufferers. Sinusitis, headaches, allergies, and chemical sensitivities are reported by fibromyalgics and vulvar pain sufferers alike.
Thus, it is not surprising that the medical literature abounds in references to excessive "somatization" by women experiencing vulvar pain. Since the dawn of Freudian psychology, painful sex has been attributed to hysteria. Thousands of women report being told by clinicians that the pain was "all in their head" and that there was no for further investigation. Recent research identifying specific cytokines (pain-producing cells) in the vulvar skin of women with vulvar vestibulitis should — finally — put that accusation to rest.
"The research needed to delve more deeply into the basic science of vulvar pain and associated disorders is complex and quite expensive to undertake. It remains for the medical and scientific communities and a host of patient advocacy organizations to pool their energies and resources to secure adequate funding for research. That is both the challenge and the promise of the future."
Executive Director
The Vulvar Pain Foundation
Although no epidemiological studies have been made in connection with vulvar pain, one indication of the prevalence of the condition is the 25,000 women who have communicated with The Vulvar Pain Foundation. They are considered "the tip of the iceberg." A conservative estimate is that a quarter million women in the U.S. alone suffer from the condition. Several studies of painful sex in the general female population found that 15% reported some degree of pain or discomfort at their vaginal opening throughout their sexual lives.
Age of onset: Although studies indicate that 25 is the average age for the onset of vulvar pain, the range is from age 2 to 91. Though some women report the pain started suddenly, in-depth interviewing usually reveals that symptoms developed over time.
Heredity: Several small studies note that 99% of women with vulvar pain are Caucasian; and clinicians report a general impression of fair-skinned women. This characteristic has led many to consider the possibility of a genetic link. Yeast infections: Vulvar pain tends to be triggered by different incidents, especially yeast (candida) infections. Studies, however, do not differentiate those yeast infections diagnosed by lab tests (vaginal cultures) from those diagnosed symptomatically and treated empirically — a widespread gynecological practice. The symptoms of a yeast infection and vulvar pain flare-ups mimic each other almost identically.
Based on thousands of first-hand reports from women to The Vulvar Pain Foundation during the past five years, a cluster of major successful treatments has emerged. These are low oxalate treatment, NAG (N-acetyl-glucosamine) treatment, topical estrogen treatment, pelvic floor muscle rehabilitation using biofeedback, and guaifenesin. Also, avoiding harmful treatments and using natural, practical measures help reduce pain and discomfort and aid the healing process.
