Vulvodynia

Victoria is a 36-year-old housewife living in Arizona, where her medical nightmare began. By all appearances she is the perfect model of the TV soccer mom, with a boy, 10, a girl, 7, a comfortable house in the suburbs and a 1998 Dodge 7-passenger minivan. Victoria also has a common, but relatively unknown disease, one that consumes her life. It is a disease with no cure - a disease that until recently had no name. It is a malady so personal, that Victoria won't discuss it with her closest friends or relatives, yet one afflicting 20 million or more American woman.

Victoria has "Vulvodynia" - a constant burning and irritation in the mouth of her vagina. She cannot wear pantyhose or jeans. She is extremely uncomfortable sitting or even standing for long periods. Victoria describes it as "'like a particularly painful and irritating yeast infection that never goes away." She's been forced to live with the pain and discomfort for years, because doctors at first misdiagnosed her condition, a too typical occurrence, and then could not find anything to relieve her symptoms. For Victoria, the symptoms of Vulvodynia first appeared in her late twenties, after the birth of her second child. But she thought these might be normal symptoms after giving birth.

Sexual play and intercourse are intolerable. She went to her family physician thinking she had a bladder or yeast infection. However, the doctor who performed the pelvic exam found no abnormalities. She tried her gynecologist, who found red blood cells in her urine and referred her to urologist. The urologist determined that she had a urinary tract infection, although cultures of the urine showed no bacteria. He started Victoria on antibiotics.

"Because I didn't have an infection the antibiotics didn't help," said Victoria. "I was desperate - and desperately uncomfortable. I couldn't take part in daily living, it seemed." In her desperation she went to a series of new gynecologists and even tried consulting a psychologist after being convinced by a gynecologist that the whole problem was "in her head."

Finally she worked her way from one doctor referral to another until she met Dr. James Brown*, a gynecologist recommended by her family doctor. Dr. Brown diagnosed Victoria with "Vulvodynia." In medical terms, it sounded clear cut to Victoria. The doctor told her that Vulvodynia is a female medical syndrome of chronic vulvar discomfort characterized by complaints of burning, stinging, irritation or rawness.

Then he told her what she didn't want to hear -- that there was no known cure. "We've been studying this disease for the past century, but most intensely during the past 25 years. It is still not clear whether this is a neurological, dermatological, gynecological, urological, immunological, metabolic or infectious disease. There is ongoing research into the cause and effective treatments for Vulvodynia in all of these areas.

"There also appears to be some overlap with this disease and some other chronic conditions such as fibromyalgia (which is a painful muscle condition with chronic fatigue and flu-like symptoms), migraine headaches, and the irritable bowel syndrome." He said, "The current treatments include surgery, biofeedback, interferon injections, low oxalate diet, antifungal medications, and chronic pain therapies."

The frequency of Vulvodynia in the U.S. is still unknown, but it is believed to be widespread, possibly affecting one in seven women. It is rarely mentioned in surveys on women's health problems and is not known to many physicians or included in most medical school curricula. In a 1991 report in the American Journal of Obstetrics and Gynecology, Dr. M.F. Goetsch estimated it to be in as high as 15 percent of women. However, the accuracy of such numbers is questionable since it is so often unrecognized or misdiagnosed. Research reports on Vulvodynia are scarce. The National Institutes of Health convened a workshop on the subject in April 1997, and published the proceedings of this forum.

There are two national groups, the National Vulvodynia Association (NVA) and the Vulvar Pain Foundation (VPF), both of which offer peer counseling and support through local chapters. The National Vulvodynia Association, located in Maryland (301-299-0775), also promotes education of the medical community and the public about this disease. Similarly, the Vulvar Pain Foundation located in North Carolina (336-226-0704), supports research and education in the area of vulvar pain.

In searching the Internet, Victoria did discover the National Vulvodynia Association, which she jointed and began attending meets in her area, where she met many women with the same problem and learned that she was not alone with this condition. The also found out about the Vulvar Pain Foundation from her peers and wrote to them for information on the treatment of this condition.

In these support groups as well as with any individual therapy, it is recommended that meetings are held jointly with husbands/partners. The reason is that any sexual dysfunctional condition is disturbing to a marriage and both partners are affected. Sex is equated with love and either consciously or unconsciously men may come to believe that their partners are using this pain as an excuse to avoid sex. Often there is a lack of communication about the problem and they come to avoid discussing it rather than to rock the relationship.

They become frustrated with the failure of medical professionals to provide satisfactory solutions to the problem and both find it a threat to their self-images as a man or woman. Either of both partners may become depressed about their inability to enjoy sexual intercourse. Sex therapists who deal with this problem advise their clients to continually reassure each other that their love remains strong to reinforce these statements with frequent physical contact such as hugging, kissing, massage and oral sex.

Finally, both should continue to aggressively seek answers to this problem. For this demonstrates that their libidos are not declining due to the depressive aspects of this situation.

There are various treatments being tried to cure Vulvodynia - with limited success for some patients. "Vestibular vestibulitis" seems to be a specific sub-group of Vulvodynia, which is a most frequent cause of painful intercourse in premenopausal women. There is pain on touch or vaginal entry; exquisite tenderness to a cotton swab lightly touching the vestibular area (known as the "swab test"); and physical findings confined to vestibular redness. Women with vestibular vestibulitis cannot tolerate insertion of a speculum, manual foreplay or active intercourse. This specific condition is most commonly recognized by physicians and has been treated successfully in some cases with surgical removal of the involved area. However, surgery remains a drastic solution of last resort.

There are a large number of women who do not have localized pain or redness where most physicians search for an infectious cause. These would include candida (a fungus), human papilloma virus, and herpes simplex. Or failing to find any evidence to support this line of investigation, skin conditions would be considered next, such as lichen sclerosis or inflammatory reactions. Finally, nerve damage causes of pain would have to be evaluated including conditions called pudendal neuralgia and reflex sympathetic dystrophy.

Recently, Dr. Clive C. Solomons, Ph.D., a biochemical researcher discovered that oxalate, a substance known to cause irritation and burning in tissue was present in abnormally high amounts in urine and was associated with pain experienced in different parts of the body. Further research led to the development of a non-surgical treatment that was effective in reducing pain in the majority of participants in the study.

Dr. Solomon tests the urine of his patients to determine if it contains an excess of oxalate. Then he uses dietary restriction of oxalate with calcium citrate and Vitamin C to lower the oxalate levels. High oxalate foods include spinach, sweet potatoes, nuts, chocolate, celery, etc. are forbidden. Dr. Solomon stated that the gynecologists who do the excisional surgery on the patients with vulvar vestibulitis do not like his medical therapy because it is taking away business.

Unless a specific cause can be determined, the treatments become trial and error, as in Victoria's case. Thus, the first line of significant treatment is often with antidepressants or anticonvulsants used to treat chronic pain syndromes. These include such drugs as Amitriptyline, Pamelor, Norpramin and Neurontin. It is difficult to determine the success rate in using this type of drug therapy because the number of cases studied is small and some spontaneous cures do occur.

Mindy is another example of the trial and error nature of the cure. She had a different situation. Mindy is a 60-year old post-menopausal female who is the mother of four and who has had problems with repeated yeast infections for the prior ten years before she was told that she had Vulvodynia. Several physicians told her that the problem with pain and burning in the vagina was due to estrogen deficiency.

She was treated with estrogen cream and testosterone creams, but these merely aggravated her problem because they come in an alcohol base which she finds intolerable. She was also giving a cortisone cream in an alcohol base that set her vagina on fire and sent her screaming into a cool tub of water. Currently she is on hormonal replacement therapy consisting of Premarin and Provera. After taking this for a month her symptoms subsided and she thought that this was the answer, but it was only a temporary reprieve. Next she tried avoiding chocolate and this too worked only for a brief period. Finally she went to meetings of the support groups and learned about other treatments the participants had tried. There was a surgical treatment for vulvar vestibulitis with removal of the diseased area. This had been either partially or completely effective in some women, but not in all and Mindy's condition seem to be more diffuse.

Mindy met several women in the support group who claimed the low oxalate diet and calcium had been effective in controlling their pain. Dr. Solomons reported 80 percent of over 1200 patients respond to the treatment. So Mindy purchased the low oxalate diet booklet produced by the VPF support group and began to religiously adhere to the restrictions on her food intake as well as take supplemental calcium.

After several weeks there was dramatic improvement in her pain symptoms. However, this lasted only about a month and then the discomfort and pain recurred with no change in the type of diet she was following.

At this point she decided to investigate other methods of chronic pain control such as biofeedback to relax spastic pelvic muscles. "Biofeedback" is an electronically assisted measurement of physiological processes such as blood pressure, pulse rate, and muscle contraction. With the aid of computers a specific process is translated into an auditory or visual signal which the patient learns to control by modifying their body's response. For example, a light turns off when the patient relaxes a certain muscle. Dr. Howard Glazer, Ph.D., applied biofeedback techniques to Vulvodynia and vulvar vestibulitis to relieve tension in pelvic muscles. In the first 35 patients treated with this technique, he reported a reduction in pelvic pain in 80 percent. Slightly over 50 percent were pain free at the end of the treatment and remained pain-free at six-month follow up. Unfortunately, Dr Glazer works in New York City and Mindy was unable to leave her job in Virginia to travel there for an attempt to test the effectiveness of this technique on her disease.

However, at a later meeting of the support group she learned of a new treatment using magnets inserted in pads which are sewn into the underpants to cover the vulva. Such magnets are used by arthritis patients to relieve joint pain and swelling. Initially, these magnet pads were being supplied free of charge for all who wished to try them But there were so many volunteers, that more pads had to be obtained. But this is not part of a controlled medical study where some get non-magnet pads and others the real thing so that the difference can be compared. This kind of scientific study seems to be in short supply in Vulvodynia treatment.

Dr. Julius Metts described several illustrative cases in his March 1999 article, "Vulvodynia and Vulvar Vestibulitis," in American Family Physician. The first case was a 23 year-old woman treated twice for a suspected urinary tract infection while traveling in Europe. On returning home, she continued to have pain and urgency on urination with vaginal soreness, slight itching and painful intercourse.

Urinalysis and cultures of the urine, vagina and cervix were all normal. During the next two months the patient went to emergency departments twice and visited four different family physicians. She was treated with numerous antibiotics for presumed cystitis. She was also treated with oral and topical antifungal agents with only temporary relief. During the next two months she experienced painful intercourse with intermittent vulvar pain and irritation. She subsequently saw four gynecologists, a urologist and two primary care physicians.

Pelvic exam revealed an area of redness in the back of the vagina and mild tenderness to the swab test. She was treated with an another antibiotic for possible cervicitis. She was then given a diagnosis of Vulvodynia and was prescribed gradually increasing dosages of amitriptyline, along with oral calcium gluconate, and a low-oxalate diet. She was referred to a support group and to a physical therapist specializing in women's health problems for pelvic strengthening, relaxation training and biofeedback training. Over the next three months, she reported a 70 to 90 percent improvement in her symptoms with occasional mild exacerbation.

The second case was a 45-year old woman with a history of one term pregnancy who developed urgency, redness of the vulvar area and irritation at the base of the clitoris that began suddenly after intercourse. Subsequent symptoms included burning, rawness and painful intercourse, which increased with walking and sitting, and also increased one week before menses. The use of an antifungal cream caused further burning and irritation.

Over the next five months the patient saw a nurse practitioner and two family physicians. She received treatment numerous times for yeast vaginitis and bacterial vaginosis with topical medications. Any improvement was temporary, and symptoms invariably returned. Vaginal cultures grew normal organisms, and no yeast was detected by special exams.

Estrogen vaginal cream gave no significant relief. Over the following two months the patient saw two gynecologists and was diagnosed with vestibulitis. She was treated with a steroid-antifungal cream for two months and felt improvement in the first week, but later developed further irritation of the vulvar and clitoral area. No biopsies were performed. She was referred to a third gynecologist, who instructed her to stop all topical medications. She began taking calcium citrate, started a low-oxalate diet and was referred to a vulvar pain support group. Over the next year she was treated with an oral antifungal agent for four months.

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She also began biofeedback training and physical therapy for pelvic muscle relaxation and strengthening. The patient underwent a total of two and one half years of treatment. During her last year of treatment, she experienced a 90 percent improvement in symptoms.

Thus, as these cases illustrate, Vulvodynia is a relatively common disease, which is often misdiagnosed, but can often be successfully treated using an array of treatments. It is now well accepted that the pain is real - even when a precise cause cannot be determined. The causes, frequency and search for successful treatment require more investigation and controlled scientific studies, rather than the trial and error methods currently employed. For more information, and/or to find a physician in your area knowledgeable about Vulvodynia, contact either the National Vulvodynia Association or the Vulvar Pain Foundation. A Medline search of the National Library of Medicine will also provide many sources of information and contacts with those studying or suffering from this condition.

TREATMENTS FOR VULVODYNIA

• Surgery for localized vestibulitis

• Nerve blocks

• Injections of Interferon

• Biofeedback to relax pelvic muscles

• Tricyclic antidepressants and anticonvulsants for chronic pain

• Low oxalate diet

• Estrogen replacement for hormone deficiency

• Topical anesthetics and steroids

• Testosterone topically for lichen sclerosis

SUPPORT GROUPS FOR VULVODYNIA

National Vulvodynia Association
P.O. Box 4491
Silver Spring, MD 20914-4491
(301) 299-0775

Vulvar Pain Foundation
P.O. Drawer 177
Graham, NC 27253
1-910-226-704

International Pelvic Pain Society
Women's Medical Plaza Suite 402
2006 Brookwood Medical Center Drive
Birmingham, AL 35209
1-800-624-9676

Last updated: 2000.  Last reviewed 10/05.

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