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.
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.