Pelvic floor symptoms in cisgender women with Ehlers-Danlos syndrome: an international survey study.

Abstract

Ehlers-Danlos Syndrome (EDS) is a group of inherited connective tissue disorders associated with abnormal collagen, and is more prevalent in women than in men. The aim of this cross-sectional study was to characterize pelvic floor symptoms in cisgender women with EDS and to describe their impact on quality of life. An online questionnaire on obstetric and gynecological experiences of cisgender women with EDS was disseminated through EDS patient societies and social media. This study was a sub-analysis of the broader questionnaire and focused on pelvic floor disorders, whereby self-reported symptoms and validated questionnaires were used to assess pelvic floor symptom severity (Pelvic Floor Distress Inventory, PFDI-20), impact on quality of life (Pelvic Floor Impact Questionnaire, PFIQ-7), and sexual function (Female Sexual Function Index, FSFI-6). Groups based on age and EDS type were compared using Kruskal-Wallis and Chi-squared tests. A total of 1,303 participants were included in the analysis. Pelvic floor symptom prevalence included: stress urinary incontinence in 60%, urgency urinary incontinence in 54%, fecal incontinence in 24%, and pelvic organ prolapse in 21%. Bladder symptoms were reported to be the most bothersome. The impact of prolapse symptoms on quality of life was higher in women under age 40 than in older participants (p<0.001). Pelvic pain was reported in 71%. Pain ratings were highest for dysmenorrhea, muscle and joint pain, and backache (median 7 out of 10 for each). Almost half of participants screened positive for possible sexual dysfunction and 36% reported dyspareunia more than half the time. This large, observational study demonstrated that cisgender women with EDS report a high prevalence of pelvic floor symptoms that appear to be more severe than in the general population.