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.[1; 2]
Hypermobility spectrum disorders (HSD) are a group of conditions with symptomatic joint hypermobility that do not fulfill the diagnostic criteria for hypermobility type EDS.[3] 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.
[4] 77% of females with EDS have painful sexual intercourse (dyspareunia),[5-7] compared to 20% of females in the global population.[8; 9] Vulvodynia is chronic vulvar pain with dyspareunia.[10] Vulvodynia pain can be triggered by wearing clothing that contacts the vulva (external genitals) or by having vaginal sexual intercourse.[11] Pain from vulvodynia can be so severe that it can render sexual intercourse impossible and may drive women to have suicidal thoughts.
[12-14] EDS/HSD and vulvodynia share several comorbid conditions that have been identified separately but the association between the two has never been reported.[15] 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%).[15] 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, intermittent, 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. We will examine generalized and vulvar pain in an online survey accessed via social media. We will recruit 825 females (275 with EDS/HSD only, 275 with vulvodynia only, and 275 with EDS/HSD and vulvodynia). Pain location, intensity, quality, and the pattern will be measured with PAINReportIt®, a computerized tool used to characterize pain. The characterization of generalized and vulvar pain in females with EDS/HSD and/or vulvodynia will allow for the identification of pain patterns and comorbid condition patterns as well as allow for the development of targeted treatment methods.
Therefore, our aims are Aim 1: Characterize pain patterns across the sensory aspect 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 patterns.
Females with and without EDS/HSD suffer from debilitating generalized and vulvar pain without effective treatment options.[3; 16; 17; 11] In order to know whom to target with which treatment strategies, it is critical to consider females’ experiences with pain and comorbid conditions holistically. This study provides a framework for developing personalized healthcare with the greatest impact on the treatment of millions living with chronic pain.
Research Fund: $5,000
Primary Investigator:
Dr. Jennifer Glayzer
University of Illinois Chicago