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Published on: February 10, 2023
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.
Insights
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.
Introduction And Objectives:
Hypermobile Ehlers-Danlos Syndrome (hEDS) is the most common subtype of Ehlers-Danlos Syndrome, a group of connective tissue disorders caused by collagen abnormalities. While musculoskeletal features of hEDS are well characterized, its impact on visceral organs, including the bladder, remains underexplored. Despite frequent patient reports of urinary symptoms, a definitive link between hEDS and bladder pathology has not been established. This study aims to characterize lower urinary tract symptoms (LUTS) and urodynamic (UDS) findings in patients with hEDS to better understand potential mechanisms underlying bladder dysfunction in this population.
Materials And Methods:
A retrospective chart review was conducted on patients with hEDS who underwent video UDS at a single tertiary-care center between 2022 and 2025. Inclusion criteria included age > 18, confirmed hEDS diagnosis (2017 criteria), and completed UDS. Data were analyzed using Welch's t-test and Fisher's Exact Test.
Results:
Among 27 patients, the mean age at hEDS diagnosis was 30.9 years (range 18-49), 92.6% (n = 25) were female, and 92.6% (n = 25) were white. Common LUTS seen in these patients included frequency in 74.1% (n = 20), incontinence in 14.8% (n = 4), frequent urinary tract infections in 25.9% (n = 7), bladder pain in 33.3% (n = 9), nocturia in 48.1% (n = 13), and weak stream in 51.8% (n = 14) of patients. UDS findings revealed no evidence of detrusor overactivity, stress urinary incontinence, or abnormalities in compliance. 1 patient had incomplete emptying with a pre-study post-void residual of 500 mL. Pelvic floor dysfunction was seen in 18.5% (n = 5) with active EMG noted during emptying. Pelvic floor physical therapy was the most common intervention recommended, followed by beta-3 agonists for overactive bladder symptoms.
Conclusions:
Our findings demonstrate that LUTS are prevalent in patients with hEDS, with evidence pointing to pelvic floor and neurologic dysfunction as key contributors rather than intrinsic bladder pathology. These results support prioritizing a pelvic floor-focused approach to evaluation and management of hEDS-related LUTS.
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