VULVAR PAIN SYNDROME: YOU ARE NOT ALONE!

by Anne Grenn Saldinger, M.A.

Think about this situation .... You are a young woman and your physician has just diagnosed you as "depressed." You experience periods of helplessness, hopelessness, and low self-esteem. You have been sleeping poorly for the last 6 months (rarely sleeping for more than an hour or two at a time) and have lost 15 pounds. These are, in fact, all symptoms of depression.

However, during the last eight months you have also been experiencing a number of disturbing physical symptoms: intense burning and sharp stinging pain in your vagina and redness and rawness of the female genitalia. You have undergone treatment which has included testing for STDs (all negative), use of topical creams, antibiotics and tranquilizers; even laser surgery and still the pain persists. Where can you turn to next?

This symptomatic picture describes a complex gynecological disorder know as vulvar pain syndrome or vulvodynia. A woman presenting with these symptoms would typically have been to several doctors without receiving an accurate diagnosis. The condition varies in persistence and severity, but as with most chronic pain, has a profound impact on the quality of one's life.

Vulvar pain syndrome affects women from adolescence through menopause, and its prevalence is high among women in the United States. Pain may occur spontaneously and may be triggered by a wide variety of activities: from engaging in sexual intercourse to walking to wearing tight-fitting clothing. This interference with daily functioning can impair one's ability to work or study, to engage in physical exercise, and to participate in a full social life.

Accordingly, vulvar pain syndrome can become physically and emotionally overwhelming to those who are affected, especially when the woman is without a supportive health care system. All these factors put the woman at risk for reduced self-esteem, relationship stress, sexual difficulties, poor body image and depression.

Unfortunately, due to lack of knowledge and discomfort with sexual health issues on the part of medical professionals there has been misunderstanding, misdiagnosis and a poor response to women suffering from vulvar pain. This has often amplified the problem and contributed to feelings of isolation and despair as well as social and emotional withdrawal.

Since there is an urgent need for increased awareness about vulvar pain syndrome, the patient must be proactive in finding those who can work toward determining the most effective and individualized treatment possible. This may require an interdisciplinary team of health professionals who not only have a basic knowledge of the varied symptomology, the possible physical causes and treatment options, but also have an understanding of the psychological impact of chronic pain.

When various medical treatments have been unsuccessful, the syndrome has often been interpreted as being secondary to psychological problems. However, there is no question that the pain is real even if the physical reason cannot be identified.

There is no evidence that vulvar pain syndrome is caused by infection or that it is a consequence of a sexually transmitted disease. Although the causes are unknown, there are thought to be multiple contributing factors. These include: possible injury to, or irritation of, the nerves that enervate the vulva localized hypersensitivity to infection high levels of oxalate crystals in the urine spasms of muscles that support the pelvic organs

There are now two national organizations who provide information and resources to women suffering from vulvar pain.. They also provide support networks helping women to make connections in their local communities. It has been found that support groups are very effective in breaking down the isolation experienced as well as to support each other in the process of finding the most effective treatment.

Women suffering from vulvar pain syndrome may want to seek help from a mental health professional for any number of reasons. You are likely to have concerns about learning coping strategies and pain management skills, and dealing with the effects in your daily life of living with chronic pain. Another major concern is how onešs ability to engage in most sexual activity is impacting one's sense of self as well as onešs marriage or relationship.

Resources are expanding all the time with the most up-to-date information available through the two national organizations:

The Vulvar Pain Foundation
Post Office Drawer 177
Graham, North Carolina 27253
Phone: (910) 226-0704 Fax: (910) 226-8518

National Vulvodynia Association
PO Box 4491
Silver Spring, MD 20914-4491
Phone: (410) 686-7011 Fax: (301) 299-3999

5/28/98

Anne Grenn Saldinger is a social worker and doctoral candidate in clinical psychology at the Wright Institute in Berkeley, CA. She has counseled women and developed resources concerning vulvar pain syndrome at the Cowell Student Health Services at Stanford University.

 

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