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Beyond Joint Hypermobility: Investigating Bladder Dysfunction in Hypermobile Ehlers-Danlos Syndrome.
Marium Ansari1, Mallory Pine1, Viktoriya Sapkalova1,2
1Indiana University School of Medicine, Indianapolis, Indiana, USA.
Neurourology and Urodynamics
|June 18, 2026
Summary
Lower urinary tract symptoms (LUTS) are common in hypermobile Ehlers-Danlos Syndrome (hEDS). Findings suggest pelvic floor and neurologic dysfunction, not intrinsic bladder issues, are the primary causes. Management should focus on pelvic floor therapies.
Area of Science:
- Urology
- Genetics
- Connective Tissue Diseases
Background:
- Hypermobile Ehlers-Danlos Syndrome (hEDS) is a prevalent inherited connective tissue disorder.
- Musculoskeletal manifestations of hEDS are well-documented, but visceral organ involvement, particularly bladder dysfunction, is less understood.
- Patients with hEDS frequently report lower urinary tract symptoms (LUTS), yet a direct link to bladder pathology remains unconfirmed.
Purpose of the Study:
- To investigate the prevalence and characteristics of LUTS in patients diagnosed with hEDS.
- To evaluate urodynamic (UDS) findings in this patient cohort to identify underlying mechanisms of bladder dysfunction.
- To establish a clearer understanding of the relationship between hEDS and lower urinary tract conditions.
Main Methods:
- A retrospective review of patient charts was performed for individuals with hEDS who underwent video urodynamic studies (UDS).
- The study included adult patients (>18 years) with a confirmed hEDS diagnosis based on the 2017 criteria.
- Statistical analysis utilized Welch's t-test and Fisher's Exact Test to compare data.
Main Results:
- The study analyzed data from 27 hEDS patients (mean age 30.9 years; 92.6% female).
- Prevalent LUTS included urinary frequency (74.1%), nocturia (48.1%), weak stream (51.8%), bladder pain (33.3%), and urinary tract infections (25.9%).
- Urodynamic studies showed no detrusor overactivity or stress urinary incontinence; however, pelvic floor dysfunction was observed in 18.5% of patients.
Conclusions:
- Lower urinary tract symptoms are highly prevalent in individuals with hypermobile Ehlers-Danlos Syndrome.
- Evidence suggests that pelvic floor dysfunction and potential neurologic factors are more significant contributors to LUTS in hEDS than intrinsic bladder pathology.
- A pelvic floor-centered approach is recommended for the evaluation and management of LUTS in the hEDS population.
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