hEDS and Pelvic Floor Dysfunction: The Overlooked Connection + How Physical Therapy Can Help in St. Paul
Chronic pain. Bladder issues. Digestive problems. Feeling like your body is “falling apart” despite normal imaging or labs.
For many people living with hypermobile Ehlers-Danlos syndrome (hEDS), symptoms can feel confusing, disconnected, and frustratingly dismissed. It’s common to see multiple specialists for years before finally hearing the words: “You may have hypermobility” or “This sounds like hEDS.”
At The Good Movement Pelvic Health and Wellness in St. Paul, we often see patients who have spent years trying to understand symptoms like pelvic pain, prolapse, urinary urgency, constipation, hip pain, painful intercourse, POTS, fatigue or persistent instability — only to later realize there may be a connective tissue component tying it all together.
If this sounds familiar, you are not alone.
What is hEDS?
Hypermobile Ehlers-Danlos syndrome is a connective tissue disorder that affects the body’s collagen — an important building block that provides structure and support to joints, ligaments, skin, blood vessels, and pelvic tissues.
Unlike some other forms of Ehlers-Danlos syndrome, there is currently no definitive genetic test for hEDS, meaning diagnosis relies on clinical criteria, symptom history, and examination.
People with hEDS often have:
Joint hypermobility (“double-jointed”)
Frequent sprains or injuries
Joint instability or subluxations
Chronic pain
Fatigue
Easy bruising
Soft or stretchy skin
Poor body awareness (proprioception)
Digestive issues
Pelvic floor dysfunction
Many people describe feeling like they have always been “bendier” than others or were praised for flexibility in dance, gymnastics, yoga, or sports — until pain, instability, or fatigue caught up with them.
Why Does hEDS Take So Long to Diagnose?
Research suggests that many people with hEDS wait 10 years or more for diagnosis, often seeing numerous healthcare providers before getting answers. Women and people assigned female at birth are especially likely to be misdiagnosed or told symptoms are anxiety, stress-related, or simply “normal.” Delays happen because symptoms span many body systems and don’t always fit neatly into one specialty.
People with hEDS are commonly misdiagnosed with:
Anxiety alone
Fibromyalgia
Chronic pain syndromes
Irritable bowel syndrome without deeper evaluation
Endometriosis alone
“Weak core” or poor posture
Unexplained pelvic pain
The reality? A connective tissue disorder can affect nearly every system in the body.
Signs You Might Have hEDS (That Providers Sometimes Miss)
You do not need every symptom to have hEDS, but patterns matter.
Common signs include:
You were always “super flexible”
Could you do the splits easily? Bend your thumb to your forearm? Lock your knees backward? Impress friends with party tricks?
Hypermobility is often normalized until symptoms appear later.
You feel unstable instead of stiff
Many people with hEDS say:
“I feel loose, unstable, or fragile.”
Rather than muscles being “too tight,” muscles may actually be working overtime to create stability, causing chronic tension and pain.
Frequent injuries or recurring pain
Examples include:
Repeated ankle sprains
Hip instability
SI joint pain
Shoulder issues
Rib pain or slipping ribs
Chronic neck pain
TMJ dysfunction
You have multiple “unrelated” symptoms
A common hEDS story sounds like:
“I have bladder urgency, constipation, dizziness when standing, migraines, pelvic pain, GI issues, and chronic fatigue — but nobody can connect the dots.”
How hEDS Affects the Pelvic Floor
The pelvic floor is made of muscles and connective tissue, meaning hEDS can have a significant impact.
Pelvic Organ Prolapse
Because connective tissues may provide less support, people with hEDS can experience prolapse at younger ages or with less obvious risk factors.
This may feel like:
Vaginal heaviness
Pressure
A bulging sensation
Difficulty emptying bladder or bowels
Importantly: Symptoms do not always match severity, and prolapse does not automatically mean surgery.
Bladder Symptoms
People with hEDS may experience:
Urinary urgency
Frequency
Leakage
Incomplete emptying
Painful bladder symptoms
Sometimes the pelvic floor becomes overactive and protective, contributing to urgency and pain.
Constipation + Bowel Dysfunction
Connective tissue differences and autonomic nervous system involvement may contribute to:
Constipation
Slow motility
Straining
Difficulty evacuating stool
Pelvic floor discoordination is also common.
Pelvic Pain + Pain With Sex
Painful intercourse, tampon intolerance, pelvic pressure, vulvar pain, or generalized pelvic pain can occur.
One of the biggest misconceptions is that people with hEDS only have “weak” muscles.
In reality, many patients actually have a highly guarded, overworking pelvic floor trying desperately to stabilize the body.
hEDS Affects More Than the Pelvis
Because connective tissue exists everywhere, hEDS can influence multiple body systems.
Nervous System + Dysautonomia
Many people with hEDS also experience symptoms consistent with autonomic dysfunction, including dizziness, racing heart, temperature regulation issues, or exercise intolerance. Conditions like Postural Orthostatic Tachycardia Syndrome commonly overlap.
Gastrointestinal Symptoms
GI symptoms may include:
Bloating
Reflux
IBS-like symptoms
Constipation
Nausea
Food sensitivities
Chronic Pain + Fatigue
When joints are unstable, muscles often compensate constantly.
Imagine your body trying to “hold itself together” all day long — fatigue makes much more sense in that context.
Jaw, Neck, and Orthopedic Issues
TMJ dysfunction, headaches, hip pain, rib instability, and recurring orthopedic injuries are common in people with hEDS.
How Physical Therapy Can Help hEDS
If you’ve ever been told to simply “strengthen your core” or stretch more — and it made things worse — you are not imagining things.
Physical therapy for hEDS looks different.
At The Good Movement Pelvic Health and Wellness in St. Paul, treatment is individualized and focused on helping your body feel more supported and resilient without flaring symptoms.
PT may help through:
Stability Training (Without Overdoing It)
For hypermobile bodies, the goal is often controlled strength and stability, not aggressive stretching.
We focus on:
Deep stabilizing muscles
Joint support
Functional movement
Motor control
Safe strengthening
Pelvic Floor Assessment
The pelvic floor is not automatically weak.
A comprehensive pelvic PT evaluation can identify whether muscles are:
Overactive
Underactive
Uncoordinated
Painful
Fatigued
Treatment may include coordination work, breathing, down-training, strength, mobility, and symptom-specific strategies.
Nervous System Regulation
Persistent pain changes the nervous system.
PT may include nervous system down-training, pacing strategies, pain science education, and ways to calm an overprotective system.
Bowel and Bladder Support
Physical therapy can help improve:
Constipation strategies
Urgency
Leakage
Emptying mechanics
Pressure management
Whole-Body Care
Because hEDS affects multiple systems, care should not stop at the pelvis.
An effective plan often considers:
Hips
Core
Rib cage
Breathing mechanics
Neck/jaw relationship
Mobility versus stability needs
Fatigue management
You Are Not “Too Young” for These Symptoms
If you have been told:
“Your imaging is normal”
“It’s just anxiety”
“You’re too young for prolapse”
“You just need to exercise more”
…yet something still feels off, it may be worth exploring whether hypermobility is part of the picture.
You deserve care that looks at the whole person, not disconnected symptoms.
At The Good Movement Pelvic Health and Wellness, we help people in St. Paul, Minneapolis, and the Twin Cities navigate pelvic floor dysfunction, chronic pain, hypermobility, and cancer recovery with compassionate, individualized care.
If hEDS or hypermobility sounds familiar, pelvic health physical therapy may help you better understand your body — and finally start connecting the dots.
Looking for pelvic floor physical therapy in St. Paul for hypermobility or hEDS? Contact The Good Movement Pelvic Health and Wellness to learn more about working with a pelvic health PT who understands complex, whole-body symptoms.