Bladder & Bowel & hEDS/HSD
Urinary and Fecal Incontinence in Hypermobility (hEDS/HSD)
None of us writing this are doctors. This page collects what the published research actually says about incontinence in hEDS/HSD, so you have something concrete to bring to a doctor.
Bladder or bowel leakage that started earlier in life than expected, or that seems disproportionate to childbirth or age, is a pattern documented in hypermobility research - and one that is often not connected to hypermobility at all by the people experiencing it.
How Common Is Incontinence in Hypermobility Syndromes?
A study published in 2009 surveyed 148 women with a hospital-confirmed diagnosis of benign joint hypermobility syndrome (BJHS), members of the UK's Hypermobility Syndrome Association, using validated incontinence questionnaires. It found overall urinary incontinence in 68.9% of respondents, compared to an estimated 30% in a similar population without the condition. Fecal incontinence was found in 14.9%, compared to an estimated 2.2% in the general adult population.
Both differences were statistically significant. The study also found that increasing age and BMI significantly affected symptom severity scores among women with fecal incontinence specifically. This is a self-selected survey of an existing hypermobility association's members with a 40% response rate, not a random population sample, so the exact percentages may not generalize perfectly to everyone with hEDS/HSD - but the gap between hypermobile and non-hypermobile populations is large enough that chance alone is an unlikely explanation.
A Smaller Clinical Study Complicates the Picture
A 2026 retrospective chart review by Ansari and colleagues, published in Neurourology and Urodynamics, looked at 27 adults with hEDS who underwent video urodynamic testing (an objective bladder-function test, not a questionnaire) at a single tertiary care center. It found a lower urinary incontinence rate than the 2009 survey above: 14.8% (4 of 27 patients). Other lower urinary tract symptoms were more common: frequency in 74.1%, weak urine stream in 51.8%, nocturia in 48.1%, bladder pain in 33.3%, and recurrent urinary tract infections in 25.9%.
The gap between that 14.8% and the 68.9% figure above likely comes down to what each study measured, not a contradiction. The 2009 study was a self-report survey capturing any incontinence a respondent noticed; the 2026 study was a small, single-center chart review of patients already referred for urodynamic testing, which selects for people being worked up for urinary symptoms generally rather than incontinence specifically. The authors' own conclusion pointed to pelvic floor and muscular dysfunction, not classic bladder-wall pathology, as the more likely driver of the symptoms they found - which lines up with the pelvic floor physical therapy recommendation below either way.
What to do with this
If you have noticed bladder or bowel leakage that seems out of proportion to your age, childbirth history, or other risk factors, it is worth naming that clearly to a doctor rather than assuming it is just something to live with. Pelvic floor physical therapy is a standard, non-surgical first step for incontinence generally and is worth asking about specifically, especially alongside the pelvic organ prolapse and pregnancy-related pelvic girdle research covered elsewhere on this site, since these systems are closely related anatomically.
Sources referenced on this page
- 01Arunkalaivanan et al., 'Prevalence of urinary and faecal incontinence among female members of the Hypermobility Syndrome Association (HMSA),' Journal of Obstetrics and Gynaecology, 2009 (n=148)
- 02Ansari et al., 'Beyond Joint Hypermobility: Investigating Bladder Dysfunction in Hypermobile Ehlers-Danlos Syndrome,' Neurourology and Urodynamics, 2026 (n=27)