National Vulvodynia Association

What is Vulvodynia?

Vulvodynia, or pain in the vulva, is a chronic condition characterized by burning, stinging and stabbing sensations. It has been described as “having acid poured on my skin” and “feeling a constant knife-like pain.” For some, the pain is constant and impacts every aspect of their lives, while others primarily have pain only with pressure or contact, such as during sexual intercourse or prolonged periods sitting.

Who Suffers?

Vulvodynia occurs in women of all ages, including adolescents, and is prevalent in women of all races, religions and ethnic backgrounds.

How Many Women Are Affected

Research studies find that as many as 16 percent of women in the U.S. suffer from vulvodynia at some point in their lives (Harlow 2003, Pukall 2016). The highest incidence of symptom onset is between the ages of 18 and 25. The lowest incidence is after age 35 (Harlow 2003).

Impact on Quality of Life

For women who suffer from vulvodynia, sexual intercourse is painful or impossible. Many young women are too embarrassed to date. It breaks up loving marriages. Some sufferers can’t sit for long periods and have to quit their jobs. Most can’t wear pants, or in some cases, even underwear. Living with the pain and so many physical limitations leads to feelings of depression and hopelessness (NVA 2015, Pukall 2016).

Seeking a Diagnosis

According to an NIH-funded Harvard study, 60 percent of affected women consult three or more doctors before receiving a diagnosis of vulvodynia. Sadly, 40 percent of women seeking treatment for vulvodynia are not accurately diagnosed after seeing as many as three doctors (Harlow 2003).

Women consult doctor after doctor seeking a diagnosis for their private burning pain. Many have been repeatedly treated for non-existent yeast infections, which can exacerbate the pain. Those who are fortunate enough to find a knowledgeable gynecologist or vulvovaginal specialist will be carefully examined and tested for all bacterial infections, fungal infections and skin diseases. At the first visit, the doctor will also take a detailed medical and sexual history. If all test results are negative, and the doctor cannot determine the cause of the pain, a diagnosis of vulvodynia is made.

What Causes Vulvodynia?

The exact cause is unknown, because there has been a lack of research funding for benign gynecological disorders. What we do know is that vulvodynia is not an infection or a sexually transmitted disease. Recent studies propose that one or more of the following may cause vulvodynia:

• an injury to, or irritation of, the nerves that control sensation in the vulva
• an abnormal response of vulvar cells to infection or trauma
• genetic abnormalities that make cells overreact to inflammation
• a localized hypersensitivity to Candida (yeast)
• weakness or spasm in the pelvic floor muscles

Treatment Options

Many treatments used to treat vulvodynia are the same ones used for other chronic pain conditions. The longstanding first-line treatment of low-dose tricyclic antidepressants is now questionable, because a recent NIH-funded study found that this medication is no more effective than a placebo in vulvodynia patients (Foster 2010). In addition to prescribing various oral medications, doctors often recommend pelvic floor muscle therapy, because pelvic floor dysfunction is common in women with vulvodynia. Psychological interventions, such as cognitive behavior therapy, are useful for dealing with depression and anxiety, which often accompany vulvodynia.

Many other treatments are used, but there is little or no proof of their efficacy. These include anticonvulsants, different topical medications, Botox injections, nerve blocks, acupuncture and anti-inflammatory agents. For women with Provoked Vestibulodynia, a common subtype of vulvodynia, pain occurs only when pressure is applied to the vestibule (the tissue surrounding the vaginal opening). If conservative measures fail, surgery (vestibulectomy) is often recommended to these women. The success rate of surgery ranges from 60 to 90 percent.

Societal Impact of Vulvodynia

To determine the social and economic impact of vulvodynia, the NVA created a web-based survey, which asked respondents to enter vulvodynia – related costs over a 6-month period. 303 women completed the survey. Using conservative prevalence estimates of 3 to 7% (up to 16% has been reported), Xie and colleagues (2012) estimated the economic impact of vulvodynia at 31 to 72 billion dollars, 70 percent of which represents direct health care costs. They concluded that vulvodynia is associated with a huge economic burden to society and the individual, and that the quality of life for women with vulvodynia is substantially impaired.