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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 Ehlers Danlos Society


Ehlers-Danlos syndromes (EDS) are a community of hereditary soft connective tissue disorders that include signs and symptoms of joint hypermobility, skin hyperextensibility and other skin texture differences, and fragility of internal organs, vessels and soft tissues. Hypermobility spectrum disorders (HSD) are a group of conditions with symptomatic joint hypermobility that do not fulfill the diagnostic criteria for hypermobility type EDS. The separation between HSD and hEDS is unclear; therefore, many use a single label of EDS/HSD. 90% of individuals with EDS/HSD have chronic pain. 77% of females with EDS have painful sexual intercourse (dyspareunia), compared to 20% of females in the global population. Vulvodynia is chronic vulvar pain with dyspareunia. Vulvodynia pain can be triggered by wearing clothing that contacts the vulva (external genitals) or by having vaginal sexual intercourse. Pain from vulvodynia can be so severe that it can render sexual intercourse impossible and may drive women to have suicidal thoughts. EDS/HSD and vulvodynia share several comorbid conditions that have been identified separately but the association between the two has never been reported. Our preliminary research of 1146 females with EDS/HSD, found 50% of the participants had vulvodynia symptoms, over 6 times that of females in the general U.S. population (8%). There is little research characterizing EDS/HSD pain (location, intensity, quality, and temporality) and no research characterizing vulvodynia in EDS/HSD. The purpose of our study is to characterize EDS/HSD pain and vulvodynia pain; and to identify patterns in pain presentation, for example, achy, intermittently, and mild pain vs. sharp, constant, and severe pain. Our study will also examine comorbid conditions (occurring together) in EDS/HSD and vulvodynia and identify if there is a relationship between the presence of comorbid conditions and pain presentation.