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Fact Sheet

What is Vulvodynia?

Vulvodynia is a chronic condition characterized by pain and burning in the vulva in the absence of infection or other known disease.  The most commonly reported symptoms are burning, stinging, and/or rawness.  Some women describe the pain as “acid being poured on their skin” or as “constant knife-like pain.”  The condition varies in persistence and location. Pain may be constant or intermittent, localized or diffuse. Vulvar vestibulitis, one type of vulvodynia, refers to pain experienced primarily when pressure is applied to the vulvar vestibule, the area surrounding the vaginal opening; this pain typically occurs with sexual intercourse, tampon insertion, a gynecological exam or simply sitting.

Who Suffers?

Vulvodynia affects women of all age groups, beginning as early as adolescence. According to an NIH-funded Harvard study, almost 16% of US women suffer from vulvodynia at some point during their lives, with more than 90% reporting ongoing pain for many years.  Approximately six million women currently suffer from vulvodynia. The incidence of symptom onset is highest between the ages of 18 and 25, and lowest after age 35 (Harlow BL, Stewart EG, JAMWA, 2003). Once considered a condition that affects primarily Caucasian women, several recent studies have shown that African American and Hispanic women are equally likely to develop vulvodynia.

Burden of Illness

Living with vulvodynia imposes serious limitations on a woman's ability to engage in normal daily activities. In many cases, the pain is so severe and unremitting that it forces women to resign from career positions, abstain completely from sexual relations and limit many physical activities, often destroying a woman's self-image. In addition, because genital disorders are not openly discussed, women with vulvodynia experience isolation and hopelessness. According to an NIH-funded study at Robert Wood Johnson Medical School (Arnold LD, et al, AJOG, 2007):

  • 75% of women with vulvodynia feel “out of control” of their bodies

  • 60% report that it compromises their ability to enjoy life

  • 60% cannot have sexual intercourse because of the pain

What Causes Vulvodynia?

Vulvodynia is not caused by either an active infection or a sexually transmitted disease.  The causes are unknown because of the lack of research on the disorder.  Current studies are investigating potential causes and trying to determine risk factors for developing vulvodynia.  Researchers speculate that one or more of the following may cause, or contribute to, vulvodynia:

  • an injury to, or irritation of, the nerves that supply sensation to the vulva

  • an abnormal response of different cells in the vulva to environmental factors (such as infection or trauma)

  • genetic factors associated with susceptibility to chronic vestibular inflammation

  • a localized hypersensitivity to candida (yeast)

  • spasm or weakness of the pelvic floor musculature

Diagnosis and Treatment

According to the previously mentioned Harvard study, 60% of women consult at least three doctors in seeking a diagnosis. Astoundingly, 40% of those who seek professional help remain undiagnosed after three medical consultations!

Vulvodynia is diagnosed when other causes of vulvar pain, such as yeast or bacterial infections, or skin diseases, are ruled out. Upon examination, the vulvar tissue may appear inflamed and swollen or perfectly normal.  Currently there is no cure for vulvodynia. Treatment directed at symptom relief includes drug therapy to “block” pain signals, e.g., tricyclic antidepressants or anticonvulsants, and occasionally nerve blocks. In women who have associated pelvic floor muscle spasm or weakness, physical therapy, biofeedback and/or Botox injections may be incorporated into the treatment plan.  When the diagnosis is a subset of vulvodynia known as vulvar vestibulitis, interferon injections or vestibulectomy (vulvar surgery to remove the painful tissue) may be recommended.

The National Vulvodynia Association is a nonprofit organization that strives to improve women's lives through education, support, advocacy and research funding. The NVA is not a medical authority and strongly recommends that you consult your own health care provider regarding any course of treatment or medication.