Unique to Women

Vulvodynia

Vulvodynia is the term developed in 1976 by the International Society for the Study of Vulvovaginal Disease to describe chronic vulvar pain. Women with vulvodynia experience severe burning, pain, itching, stinging, and/or irritation in the vulva (external genitals).

Vulvar pain can be related to a known disorder such as a bad yeast infection or a herpes outbreak. Recently clinicians have learned that pelvic floor muscle spasm or tightness (caused by a variety of conditions) is a major source of vulvar pain.

Vulvar pain in the absence of relevant visible finding or clinically identifiable disease is called vulvodynia. There are two kinds of vulvodynia. In generalized vulvodynia, symptoms occur in different areas of the vulva, at various times and sometimes even when the vulva is not being touched. In localized vulvodynia (formerly called vestibulodynia, vulvar vestibulitis, or localized vulvar dysesthesia), women feel pain mainly in an area just around the vaginal opening (the vestibule), usually when that area is touched or pressed. (For more information about the anatomy of the vulva, see Chapter 1, “Our Female Bodies.”)

Diagnosis

As many as 3 to 15 percent of women have chronic vulvar pain.²¹ Even so, it can be hard to get a proper diagnosis for it, let alone successful treatment. If your vulva hurts, it is essential to find a health care provider who is familiar with vulvodynia. To rule out vulvovaginal conditions that are known causes of pain, she or he should do a full history, pelvic exam and pH examination of vaginal secretions (wet mount), and vaginal cultures if indicated. During a pelvic exam, the practitioner evaluates the architecture and appearance of your vulva. Then she or he will lightly touch areas on your vulva with a cotton swab (Q-tip) to see where it’s sensitive. This may be painful; feel free to bring a close friend or partner with you into the exam room.

It started within the first few times I ever had sexual intercourse. Here I was with this wonderful partner, but the sex hurt so much it made us both cry—me from the physical pain, him because I hurt so much. Once it started, the pain would come back whenever something touched my vulva: a tampon, a finger, a speculum (that was the worst). I saw several nurses and doctors; the first doc told me I was just “tight” and needed to relax. Did she have any idea how insulting, demoralizing, and belittling that was? Finally, I found a physician who respected me, recognized that my pain was real, and was able to give it the label of vulvodynia. Even having a name for it helped. I’ve since tried many treatments, some more successful than others. Three years later, I’m thrilled to report that my wonderful partner and I are able to have painfree sexual intercourse (as well as continue to share other kinds of physical intimacy)—my [vulvodynia] isn’t totally gone, but it’s on its way out!

Medical Treaments for Vulvodynia

Because the causes of vulvodynia remain uncertain, there is no standard treatment. You and your clinician will first attempt to identify and treat possible pain triggers, including:

• Irritants applied to the vulva or activities that have an impact on the vulva
• Inflammatory problem such as Candida or inflammatory vaginitis (an uncommon vaginitis)
• Viral infections such as herpes
• Vulvar skin problems
• Interstitial cystitis (causing urinary and bladder pain)
• Blocked Bartholin duct (a Bartholin gland cyst occurs when a pea-sized organ under the skin on either side of the labia gets blocked and fluid fills up in the gland)
• Pelvic floor muscle spasms

If pain persists, treatment may include:

• Application of estrogen cream in the vagina, especially if there is atrophy in the vaginal walls.
• Low-dose tricyclic antidepressant, such as amitriptyline, to reduce central nervous pain; some clinicians think there is a connection between pain and the abundance of nerves in the vulva area in some women.
• Physical therapy to evaluate and treat the back and/or pelvic floor; even if there are no apparent muscle spasms, pelvic floor exercises have been found to strengthen pelvic muscles and reduce vulva pain caused by touch.
• Topical anesthetic ointment applied prior to or after intercourse.
• Exploring possible relationship issues or past sexual experiences that could contribute to painful sex; referral to a sex therapist or counselor if needed.

Experts agree that it is a combination of treatments, not any one modality, that is usually successful. If other treatments fail, some experts offer surgery such as vestibulectomy, which is the surgical removal of the vestibule and the hymen. Others feel that the studies showing success of surgery are flawed because of lack of clear definitions of pain and a lack of clear criteria for selecting the women. Other experimental treatments include Botox, which some small studies have found helpful.

Find a supportive practitioner who is knowledgeable about the vulva and has the time and knowledge to explore treatment options with you. If you have a partner, it is important to educate him or her about vulvodynia and, together, explore options for physical intimacy (see Chapter 8, “Sexual Challenges”). Also consider connecting with a support group to share stories and successes. The National Vulvodynia Association offers more information on pain management and treatment, including helpful lists of potential irritants, and can help you find referrals to clinicians and support groups in your area. 

Excerpted from the 2011 edition of Our Bodies, Ourselves. © 2011, Boston Women's Health Book Collective.

21. B. L. Harlow and E. G. Stewart, “A Population-based Assessment of Chronic Unexplained Vulvar Pain: Have We Underestimated the Prevalence of Vulvodynia?” Journal of the American Medical Women’s Association 58 (2003): 82–88.