Bladder and Pelvic Floor Dysfunction in hEDS
Bladder and pelvic floor dysfunction are highly prevalent in individuals with hypermobile Ehlers-Danlos syndrome (hEDS) and significantly impact quality of life. These symptoms stem from the disorder’s underlying connective tissue fragility, muscle coordination deficits, autonomic dysfunction, and frequent comorbidities. Many patients report urinary and pelvic symptoms as among their most burdensome.
Prevalence and Impact
Bladder and pelvic floor symptoms are reported by up to 40% of individuals with hEDS, though some cohorts report higher rates
Large observational studies in cisgender women with EDS (including hEDS) report:
Stress urinary incontinence affects 60%
Urgency urinary incontinence affects 54%
Fecal incontinence affects 24%
Pelvic organ prolapse affects 21%
Pelvic pain affects 71%
Sexual dysfunction affects nearly half
Symptoms begin early and worsen with age, childbirth, or repeated tissue trauma
These symptoms lead to sleep disruption, social withdrawal, and reduced participation in work, school, or daily activities
These rates exceed those in the general population and are particularly burdensome in women under age 40
Data for men and gender-diverse people with hEDS remain limited, so true prevalence in these groups may be underestimated
Common Symptoms and Conditions
Urinary urgency: frequent, sudden need to urinate
Urinary frequency: need to urinate often, even in small amounts
Urge incontinence: involuntary leakage before reaching the bathroom
Stress incontinence: leakage with coughing, laughing, or lifting
Voiding dysfunction: difficulty starting or maintaining urine stream
Pelvic organ prolapse: when pelvic organs shift downward and bulge into the vagina due to weak support structures
Pelvic pain: chronic discomfort or pressure in the pelvic area
Dyspareunia: pain during sexual intercourse
Interstitial cystitis/bladder pain syndrome: chronic bladder pressure, pain, and frequency without infection
Why These Symptoms Occur in hEDS
Connective tissue fragility: abnormal collagen reduces structural support for the bladder, urethra, uterus, and rectum
Pelvic floor muscle dysfunction: hypotonia (weakness) or hypertonia (spasm or tightness) disrupts normal support
Proprioceptive deficits: reduced awareness of body position contributes to voiding problems and pelvic instability
Comorbidities: dysautonomia, chronic pelvic pain, and other syndromes intensify symptoms
Poor healing and atrophic scarring: impaired tissue regeneration complicates recovery from surgery or childbirth
Role of Physical Therapy
Why Physical Therapy Is Important
Pelvic floor physical therapy (PFPT) is the first-line, evidence-based treatment for urinary incontinence, urgency, prolapse-related symptoms, and pelvic pain in both the general population and hEDS. It is particularly important in hEDS because:
Many symptoms stem from muscular dysfunction and poor pelvic support, both of which can be improved through guided exercise and retraining.
PFPT provides a conservative, non-surgical option, crucial given the high risk of surgical complications and poor healing in hEDS.
Tailored therapy can reduce pain, improve continence, and restore function in daily life and sexual health.
When to See a Physical Therapist
It is important to seek evaluation if symptoms include
Ongoing urinary urgency, frequency, or leakage
Pelvic organ prolapse symptoms (bulging, heaviness, or pressure)
Persistent pelvic pain or pain with intercourse
Voiding difficulties (hesitancy, incomplete emptying)
Functional impacts such as sleep disruption, social withdrawal, or reduced participation in activities
Early referral is also recommended before and after childbirth, as pregnancy and delivery can accelerate prolapse or incontinence in hEDS.
Why the Therapist’s Familiarity with hEDS Matters
Not all physical therapy approaches are safe or effective in hEDS. Because connective tissues are fragile and joints hypermobile, standard high-intensity regimens may worsen symptoms or cause injury. A therapist familiar with hEDS will:
Start with low-intensity, isometric exercises and progress cautiously.
Avoid maneuvers that increase intra-abdominal pressure, which can worsen prolapse.
Use biofeedback and proprioceptive training to help correct movement patterns and avoid compensatory muscle use.
Adapt techniques to prevent flares of pain, dislocations, or tissue injury.
Incorporate education on safe strategies for bladder training, lifting, posture, and long-term self-care.
Supervised therapy yields better outcomes than unsupervised exercise, and evidence supports higher satisfaction and safety when therapy is individualized and delivered by providers experienced with connective tissue disorders.
Treatment Approaches and Effectiveness
Pelvic floor physical therapy: serves as the cornerstone of treatment and requires hEDS-specific modifications
Behavioral strategies: include timed voiding, bladder training, urge suppression techniques such as the “freeze and squeeze,” and relaxation methods such as deep breathing or distraction techniques
Dietary modifications: eliminate bladder irritants such as caffeine and acidic foods
Medications: include anticholinergics that reduce urgency and frequency, topical estrogen that improves tissue strength and elasticity, and neuropathic pain medications such as gabapentin or amitriptyline
Supportive devices: provide structural assistance, with pessaries used to support prolapse
Biofeedback: offers a useful adjunct to help ensure correct exercise technique
Botox injections: relax overactive bladder muscles when used by specialists
Surgery: addresses severe cases of prolapse or incontinence but requires caution due to tissue fragility and impaired healing
Clinical Challenges
Misdiagnosis and dismissal occur frequently, especially in younger women
Embarrassment and stigma prevent patients from seeking timely care
Persistent symptoms require long-term, individualized treatment
Prolonged recovery follows childbirth or surgery due to impaired healing
Summary
Bladder and pelvic floor dysfunction are common and complex in hEDS, with prevalence rates far exceeding those in the general population. Symptoms such as urgency, incontinence, prolapse, and pelvic pain significantly impair quality of life, relationships, and daily functioning.
Pelvic floor physical therapy is the first-line treatment and is particularly important in hEDS because it offers a safe, conservative, and adaptable approach to management. Seeing a physical therapist who understands hEDS is essential, as tissue fragility, joint instability, and pain syndromes demand careful modifications to standard protocols. Supervised, individualized therapy improves continence, reduces pain, and enhances function.
Optimal care requires a multidisciplinary approach, combining physical therapy with behavioral strategies, medical treatments, and, when necessary, supportive or surgical interventions. While complete resolution is uncommon, many individuals experience meaningful improvements and greater quality of life through sustained, tailored, and expert-guided therapy.
