Females with hypermobile Ehlers-Danlos syndrome self-report more sexual problems than chronic pain controls without hypermobility, males or hypermobile spectrum disorders patients

Abstract

Background: Hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD) are heritable connective tissue disorders characterized by widespread fragile soft connective tissue affecting the skin, ligaments, joints, vasculature and internal organs. Although hEDS/HSD are autosomal dominant conditions and they would be expected to display a 1:1 sex ratio, studies report higher prevalence in women. Objectives: The purpose of this exploratory study was to determine if self-reported sexual problems differed between females and males diagnosed with hEDS or HSD compared to controls with chronic pain but no hypermobility. Methods: In this exploratory retrospective study, we examined 1,407 patients diagnosed with hEDS or HSD according to the 2017 diagnostic criteria for 8 indicators of sexual problems based on a validated screening tool. Results: Patients in each diagnosis primarily self-reported as White, non-Hispanic females (90%). Of the 1,407 patients who attended the EDS Clinic, 976 (69%) were diagnosed with HSD, 240 (17%) with hEDS, and 191 (14%) were chronic pain controls with neither diagnosis. For HSD 937 (96%) were females vs. 39 (4%) males (24:1 females-to-males), while for hEDS 210 (88%) were females vs. 30 (13%) males (7:1 females-to-males), and controls were 165 (86%) females vs. 26 (14%) males (6:1 females-to-males). Females with hEDS reported significantly higher rates of sexual issues than chronic pain controls including sexual problems (69%, p=0.018), problems with sexual interest (41%, p=0.023), sexual pain (45%, p=0.006), and orgasm difficulty (34%, p=0.022) compared to hEDS males or HSD males or females. In contrast, males diagnosed with hEDS did not report any sexual problems over controls, and males and females diagnosed with HSD both reported only one issue- more problems with sexual interest- compared to controls (females p=0.019, males p=0.018). However, the small number of males in the study limits conclusions that can be drawn for males. Conclusions: This study is unique because we examine sex differences in sexual problems in hEDS and HSD patients. Our findings indicate a higher percentage of sexual problems in females with hEDS than chronic pain controls without hypermobility, but this was not observed for females with HSD.