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Research Project

Characterization of Vulvodynia and Ehlers-Danlos Syndromes/Hypermobility Spectrum Disorders Pain in Females

Principal Investigator
Glayzer, Jennifer
Start Date
End Date
Funding Source
The Rockefeller University


The purpose of our study is to characterize vulvodynia and Ehlers-Danlos syndromes (EDS) or hypermobility spectrum disorders (HSD) pain and to determine pain phenotypes. EDS and HSD are hereditary soft connective tissue disorders that affect an estimated 1 in 5,000 people, with 90% having devastating chronic pain. Our preliminary research (N=1146) found up to 50% of the females with EDS/HSD have vulvodynia symptoms, over 6 times that of the U.S. population (8%). There is little research characterizing EDS/HSD pain, and no research characterizing vulvodynia in EDS/HSD. We will examine generalized pain and vulvar pain in a cross-sectional convenience sample online survey accessed via links in EDS/HSD and vulvodynia support groups on Facebook and Reddit. Pain will be measured with PAINReportIt® a computerized McGill Pain Questionnaire, which will measure the 4 domains of the sensory dimension of pain (location, intensity, quality, and pattern). EDS/HSD and vulvodynia share several comorbid conditions that have been identified separately but the association between the two has never been reported. The objectives of this research are to characterize generalized pain and vulvar pain, and identify comorbid condition patterns in females with and without EDS. Therefore, our aims are: Aim 1: Characterize phenotypes across the sensory dimension of pain (location, intensity, quality, and temporality) among females with EDS/HSD only, vulvodynia only, and EDS/HSD and vulvodynia. Aim 2: Characterize patterns of comorbid conditions experienced by females with EDS/HSD only, vulvodynia only, and EDS/HSD and vulvodynia, and determine how these patterns are associated with pain phenotypes.