Pelvic floor disorders in Ehlers Danlos syndrome compared to control population

To determine the prevalence and impact of pelvic floor disorders among patients with a diagnosis of Ehlers Danlos syndrome compared to controls within the same healthcare system. Cases were women ages 18 and older with a diagnosis of Ehlers Danlos syndrome receiving care within a single healthcare system over a 5-year period. Controls met the same inclusion criteria with no diagnosis of Ehlers Danlos syndrome. All subjects were contacted via MyChart to complete the PFDI-20, PFIQ-7, and a demographics survey. Appropriate statistical analyses were applied. Complete survey response rates were 23% in the EDS group and 1.1% in the control group. More patients in the EDS group had seen a specialist for urinary incontinence and prolapse; 36% and 18% respectively. For EDS patients, the median score on the PFDI-20 was 117/300 with bothersome symptoms of pelvic organ prolapse such as a bulge/pressure, increased bowel symptoms such as straining, fecal and flatal incontinence and increased urinary symptoms such as incontinence, frequency, urgency, and difficulty emptying. Conversely, non-EDS patients scored a median of 60/300 on the PFDI-20. The quality of life for EDS patients was more negatively impacted as evidenced by a higher median PFIQ-7 score: 52/300 compared to 19/300 for the control group. Pelvic floor disorders including prolapse and incontinence were reported more often and were more bothersome in patients with EDS compared to controls. These results indicate the need for targeted screening and education regarding pelvic floor disorders in patients with connective tissue disorders.