Characterization of Vulvodynia and Ehlers-Danlos Syndrome (EDS) Pain in Women

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Project Summary/Abstract Women with Ehlers-Danlos syndrome (EDS), a genetic connective tissue disorder, have an alarming 77% rate of dyspareunia (vaginal pain during sexual intercourse) compared to 20% globally. Vulvodynia (chronic vulvar pain) is one of the causes of dyspareunia. Vulvodynia has no known etiology; it decimates women’s lives, robbing them of their ability to have sexual intercourse and shatters their intimate relationships. Our research team found that women with EDS (N=1171) complained of vulvodynia symptoms and may have over six times the prevalence of vulvodynia, 51%, compared to 8% in the U.S. population. EDS affects an estimated 1 in 5,000 individuals with a female to male ratio of approximately 9:1. Ninety percent of patients with EDS have debilitating chronic pain, with nearly 40% taking disability or sick leave due to inadequate pain relief. EDS affects connective tissue resulting in frequent strange and debilitating injuries from normal activities of daily living; for example, shoulder dislocation from brushing one’s hair, spraining an ankle from walking down stairs, or hip dislocation while vacuuming. Over 60% of individuals with EDS use opioids to ease their suffering. There is a paucity of research characterizing EDS pain and no research characterizing vulvodynia in women with EDS. The purpose of our study is to characterize EDS pain and vulvodynia, and to determine pain phenotypes. We will examine generalized pain and vulvar pain in a cross-sectional convenience sample online survey accessed via links in vulvodynia or EDS Facebook support groups. We will recruit a sample of 825 women (275 in the EDS group without vulvodynia, 275 in the EDS group with vulvodynia, and 275 in the vulvodynia group). Pain will be measured with PAINReportIt® a computerized McGill Pain Questionnaire (MPQ). PAINReportIt specifically measures the 4 domains of the sensory dimension of pain (location, intensity, quality, and pattern). Characterization of vulvar pain in women with EDS and/or vulvodynia will allow for identification of generalized and vulvar pain phenotypes and comorbid condition patterns. Results will allow for targeted treatment methods to be developed to ease the suffering of women with EDS and vulvodynia.