Pelvic Floor Disorders in Ehlers Danlos Syndrome Compared to Control Population

Objectives: The aim of this study was to determine the prevalence and impact of pelvic floor disorders among patients with Ehlers Danlos syndrome relative to controls within the same healthcare system.

Methods: Cases were women ages 18 and older with a diagnosis of Ehlers Danlos syndrome (EDS) receiving care within a single healthcare system between December 19, 2018 and December 19,2023. Controls met the same criteria for age and timeframe but did not have a diagnosis of Ehlers Danlos syndrome. All subjects were contacted via MyChart to participate in the study. The PFDI-20, PFIQ-7, and a demographics survey were completed, and appropriate statistical analyses applied.

Results: Survey response rates were 23% in the EDS group and 1.1% in the control group. The majority (>70%) of participants were 55 years of age or younger and nearly 90% were Caucasian. The EDS group was more likely to have seen a specialist for urinary incontinence and prolapse even though the reported percentages were still low at 36% and 17% for the respective conditions (Table 1).
For patients with Ehlers Danlos syndrome, the median score on the PFDI-20 was 117/300 demonstrating bothersome symptoms of pelvic organ prolapse such as a bulge/pressure, increased colorectal-anal symptoms such as straining, fecal and flatal incontinence and lastly increased urinary symptoms such as incontinence, frequency, urgency and difficulty emptying. Conversely, non-EDS patients scored a median of only 60/300 on the PFDI-20 (Table 2).
Not surprisingly, patients with Ehlers Danlos syndrome also reported a higher impact of symptoms on their quality of life as evidenced by a higher median PFIQ-7 score: 52/300 compared to 19/300 for the control group (Table 2).

Conclusions: We found that symptoms of pelvic floor disorders including prolapse and incontinence are more prevalent and more bothersome in patients with EDS compared to a control population. These differences in symptoms and distress scores on validated pelvic floor questionnaires, may indicate the need for targeted screening for pelvic floor disorders in this patient population.