Pelvic muscle, nerve dysfunction may drive urinary symptoms in hEDS

Urinary symptoms, chiefly needing to pee more than usual, in people with hypermobile Ehlers-Danlos syndrome (hEDS) may not be caused by bladder problems, but instead by poor coordination of the pelvic floor muscles and the nerves involved in urination, according to a new study.

Tests in 27 patients showed that, while frequent urination was common, bladder storage function (the bladder’s ability to store urine) was generally preserved. Instead, many showed impaired coordination of the pelvic floor muscles — the muscles that support pelvic organs such as the bladder and the bowel.

According to researchers, these findings point “to pelvic floor and neurologic dysfunction as key contributors” for urinary symptoms in hEDS patients, and “support prioritizing a pelvic floor‐focused approach” to evaluate and manage hEDS‐related urinary symptoms.

The study, “Beyond Joint Hypermobility: Investigating Bladder Dysfunction in Hypermobile Ehlers-Danlos Syndrome,” was published in Neurourology and Urodynamics.

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Patients with hEDS may experience urinary problems

Hypermobile EDS is the most common type of EDS, a group of conditions that affect the connective tissues that provide structure to joints, skin, blood vessels, and other tissues and organs. EDS types are generally associated with soft and fragile skin that is easily damaged, joints that move beyond the normal range of motion, and frequent joint dislocations.

People with hEDS may also experience dysfunction of the autonomic nervous system, which controls involuntary bodily functions, and urinary problems. These include urinary incontinence, or involuntary release of urine, and pelvic organ prolapse, which is when organs in the pelvic region, such as the bladder, drop from their positions.

However, “despite frequent patient reports of urinary symptoms, a definitive link between hEDS and bladder pathology [disease] has not been established,” the researchers wrote.

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Frequent urination most common lower urinary tract symptom

To learn more, a team at Indiana University School of Medicine analyzed hEDS adults (mean age at diagnosis 30.9 years, 92.6% women) undergoing urodynamic studies, which are used to evaluate lower urinary tract function.

All patients had joint hypermobility, and most had joint pain (96.3%) and muscle pain (92.6%), increased heart rate after standing up (88.9%), muscle weakness (85.2%), and chronic fatigue (85.2%). Additional complications included joint dislocations, digestive issues, and neurological disorders.

As for symptoms affecting the lower urinary tract — which comprises the bladder, urethra, the tube that carries urine from the bladder out of the body, and (in males) the prostate — the most common was frequent urination (71.4% of participants). This was followed by weak urinary flow or sensation of incomplete bladder emptying (51.9%) and waking up in the night more than once to urinate (48.1%).

Urodynamic findings showed that about two-thirds of participants had persistent pelvic floor muscle activity while urinating, suggesting difficulty relaxing these muscles.

ur findings suggest that pelvic floor neuromuscular dysfunction and neurologic contributors … are primary drivers of urinary symptoms in this population. These results support a pelvic floor‐focused and multidisciplinary approach to the evaluation and management of [urinary symptoms] in patients with hEDS.

Overall, 18.5% of patients were diagnosed with pelvic floor muscle dysfunction. No participants showed signs of urinary incontinence during physical actions such as coughing or exercising, abnormal bladder compliance (the relationship between the change in bladder volume and the pressure exerted by the wall of the urinary bladder), or urine flowing backward.

Despite the frequent urinary symptoms, bladder storage function appeared largely preserved in these patients. According to the researchers, this suggests that urinary problems may be driven by pelvic floor muscle dysfunction, altered nerve-muscle communication, or connective tissue changes, rather than by abnormalities of the bladder itself.

Based on these findings, the most common recommendation was pelvic floor physical therapy (40.9%), followed by medications, known as beta-3 adrenergic agonists, to help treat overactive bladder symptoms (22.2%).

“Our findings suggest that pelvic floor neuromuscular dysfunction and neurologic contributors … are primary drivers of urinary symptoms in this population. These results support a pelvic floor‐focused and multidisciplinary approach to the evaluation and management of [urinary symptoms] in patients with hEDS,” the researchers wrote.

They noted that the relatively small number of participants and the fact that it was conducted at a single center are limitations of the study.