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Vulvodynia is a chronic pain condition that affects — you guessed it — the vulva! Because vulvodynia is not well known or understood - even within the medical community - we felt it was time to discuss it in “Doin’ It Well.” We were thrilled to see that as we were writing this column, news stories were also being reported on this very topic (Good Morning America, 20/20, and on Oprah’s radio show). Addressing vulvodynia in our column felt very timely indeed!

What Is It?

When considering vulvar and vaginal health, it’s important to know whether the problem is occurring outside the body (vulva) or inside the vagina. Vulvodynia, simply put, is chronic vulvar pain without an identifiable cause. Remember, the vulva is the external organs of the female genitalia, including the clitoris, inner and outer lips, urethral opening and the “vestibule” which surrounds the vaginal opening.

Women with vulvodynia experience pain on the outside of the body (the vulva). The type of pain, location, and severity varies. According to the National Vulvodynia Association, the most commonly reported symptom is burning. Other symptoms include stinging, a stabbing feeling, irritation, and rawness. Some women have described the feeling as a “constant knife-like pain” or “acid being poured on my skin.” Descriptions and experiences vary, and women of all ages, ethnicities and backgrounds can experience vulvar pain.

Subtypes

There are two main types of vulvodynia: Vulvar Vestibulitis Syndrome and Generalized Vulvodynia. Vulvar Vestibulitis is pain limited to the vestibule. The pain with this type usually occurs during or after pressure is applied to the vestibule, such as from intercourse, tampon use, or a gynecological exam. Even prolonged sitting or wearing fitted pants can cause pain.

With Generalized Vulvodynia the pain may be localized or experienced in several areas, may be more constant or occur spontaneously. Pressure to the vulva tends to exacerbate symptoms.

Talk About It!

We are pleased to see the recent media attention given to vulvodynia. For too long, healthcare providers and the public alike have not known enough about this disorder that, according to one Harvard study, affects millions of women. This same study, which was funded by the National Institutes of Health, also found that 60 percent of women who suffered from vulvodynia consulted at least three doctors in search of a diagnosis and an astounding 40 percent who sought professional help remained undiagnosed after three medical consultations!

Unfortunately, we don’t know much about the causes, but we do know that vulvodynia is not caused by an active infection or an STD. Researchers believe that there may be a few possible causes and risk factors including injury to the nerves that supply sensation to the vulva, abnormal cell response to environmental factors, genetic factors leading to susceptibility to vestibular inflammation and chronic pain, muscle spasms, and hypersensitivity to Candida (yeast).

The complexity of vulvodynia causes millions of women to go undiagnosed or misdiagnosed for years. For example, a woman suffering from vulvodynia may not have any physical symptoms such as redness, swelling or an infection. At a gynecological exam, the level of pain may not be reflected in physical presentation of symptoms. Many women may be told that it’s “all in their head,” or may spend years untreated, going from one healthcare provider to another trying to find answers.

Dx & Tx

If you experience vulvar pain, there are a number of resources available to you! Check out the National Vulvodynia Association website listed in the Sex 411. Also, take this information with you when you visit with your healthcare provider, and be sure to ask them if they have heard of or have treated women with vulvodynia. If not, ask if they can direct you to a provider who has!

After ruling out other possible conditions, a healthcare provider experienced with treating vulvodynia will make a diagnosis and offer treatment recommendations which may include lifestyle changes, coping strategies for chronic pain, eliminating feminine products or other possible irritants, oral or topical medications, pelvic floor muscle therapy, or surgery.

Remember that each experience is unique; some cases are mild, others are incapacitating. We want to stress that there are treatments available, but no single treatment works equally well for all women. By increasing our knowledge of vulvodynia, we can begin to seek treatment, educate others, advocate for more research, and find overdue relief.

Check us out next week as “Doin’ It Well” looks at getting caught on tape.