On 6 October 2017 the Women’s Health Research Institute (WHRI) in Vancouver located on the BC Women’s Hospital campus helped to launch an awareness campaign titled #ItsNotInYourHead. This campaign, championed by Dr Lori Brotto, a women’s health researcher, clinician, and executive director of the WHRI, centres on a chronic genital pain condition called provoked vestibulodynia (PVD).

PVD is a type of localized vulvodynia (pain in the vulva). The estimated prevalence of this condition is about 12% in the general population and approximately 20% of women under the age of 19. It is characterized by intense pain provoked with direct contact to the vulvar vestibule (located at and around the entrance of the vagina). This can happen during sex, when attempting to use menstrual products, during physical medical exams, when wearing tight clothing, or even when sitting (to name a few examples).

Many women who live with PVD suffer in silence for years. The average length of time it takes to receive an accurate diagnosis spans 3 to 7 years, and that’s with multiple visits to a variety of health care professionals. This is, unfortunately, because PVD is difficult to diagnose based on a physical exam as there is no physical sign of pain, infection, abrasions, or trauma. In addition, most of the symptoms (intense itching, stabbing pains, burning) are similar to those of other common conditions, such as yeast infections. All of these factors often result in women being told that their pain is in their head, which can lead to feelings of isolation, anxiety, depression, and distress. 

One way that PVD can be diagnosed is with a cotton swab test: a clinician uses a moistened cotton swab to lightly touch around the vulvar vestibule. A touch on the woman’s thigh is felt but does not provoke pain; a touch on the vulvar vestibule, however, produces immediate sharp, shooting, and stinging pain. Recommending patients to a gynecologist who specializes in vulvovaginal health or sexual medicine is also instrumental to receiving diagnosis.

The #ItsNotInYourHead campaign is bringing attention to evidence-based psychological treatment options for PVD: mindfulness meditation, and cognitive behavioral therapy. The cause of PVD is unknown and likely multifactorial, but thankfully these treatments have shown to be effective in managing pain for many women in clinical trials carried out at UBC and with funding from the Canadian Institutes of Health Research. With the help of a patient collaborator, Dr Brotto commissioned a short video that follows one woman’s journey from the onset of PVD through to her diagnosis. The video also describes the findings from the research and lets others who are suffering from the condition know that they are not alone, and that their pain is real.

To learn more about PVD, check out the campaign on Twitter, Facebook, and Instagram at @NotInYourHead17.