Sexual dysfunction in women with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders: an online community-based study

Objectives Hypermobility spectrum disorders (HSD) and hypermobile Ehlers-Danlos syndrome (h-EDS) are connective tissue disorders associated with joint hypermobility, pain, fatigue and autonomic dysfunction. We sought to assess sexual function in women with h-EDS/HSD.Methods In this cross-sectional community-based case-control study, women with h-EDS/HSD completed the following online questionnaires: Female Sexual Function Index (FSFI), 31-item Composite Autonomic Symptom Score (COMPASS-31), Beck Depression Inventory-II (BDI-II) and an additional short form with questions pertaining to comorbidities and sexual activity. Scores were compared with those of healthy female controls.Results A total of 84 women with h-EDS/HSD [mean age 37.1 years (s.d. 8.4)] and 75 healthy women [mean age 29.79 years (s.d. 5.38)] completed the questionnaires. Of these, 75% were diagnosed with h-EDS, 25% with HSD and 58% had concurrent postural orthostatic tachycardia syndrome. A majority of women with h-EDS/HSD (52%) did not engage in any sexual activity, and only 25% reported having sexual intercourse with a partner in the past 6 months. The mean COMPASS-31 score was 51.5 (s.d. 13.8), mean BDI-II score was 24.6 (s.d. 11.4) and mean FSFI score was 15.3 (s.d. 7.9) in the patient group. Compared with healthy controls, women with h-EDS/HSD had decreased FSFI scores in the subdomains of desire, arousal, lubrication, orgasm and sexual satisfaction. Neither BDI-II nor COMPASS-31 scores were predictive of the FSFI score.Conclusion Compared with healthy women, we found significant sexual dysfunction in women with h-EDS/HSD, which did not correlate with depressive or autonomic symptoms in this cohort. Given its health implications, sexual dysfunction represents a significant unmet need that calls for development of targeted diagnostic and therapeutic approaches in the care of women with h-EDS/HSD. What does this mean for patients?Hypermobility spectrum disorders (HSD) and hypermobile Ehlers-Danlos syndrome (h-EDS) are conditions that affect connective tissue and lead to hypermobile joints, chronic pain, fatigue and abnormalities in the autonomic nervous system, which controls automatic functions of the body such as heart rate, blood pressure, temperature regulation and digestion. While these disorders impact many aspects of life, their effect on sexual health has not been studied. We asked 84 women with h-EDS/HSD and 75 healthy women to complete questionnaires about their sexual health and habits, autonomic symptoms and depression. Our findings show that compared with healthy women, women with h-EDS/HSD have significant sexual dysfunction, with more than half reporting no sexual activity in the past 6 months and only a quarter of women reporting having sex in the past 6 months. Women with h-EDS/HSD had lower sexual desire, arousal, lubrication, orgasm and satisfaction than healthy women. Pain, fatigue and low sex drive were reported as some of the reasons why sex was difficult or non-existent. Depression or autonomic symptoms did not appear to predict sexual dysfunction. Our findings highlight the need for greater awareness, diagnosis and treatment of sexual health problems in women with h-EDS/HSD.