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EDS and the Pelvic Floor: What Hypermobility Really Means

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Person demonstrating hypermobility

EDS and the Pelvic Floor: What Hypermobility Really Means for Your Body

Written by Megan Jackson, Specialist Pelvic Health Physiotherapist and Clinical Director at Pelvix.

If you have been told you are “just a bit bendy,” or you have spent years collecting diagnoses that never quite fit together, this post is for you. In clinic I see a disproportionate number of patients with Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders (HSD), and the connective tissue story they carry has very real consequences for the pelvic floor, the bladder, the bowel and the joints that sit around the pelvis.

EDS is not rare in the way it is often described. It is under-recognised. And the people living with it deserve clinicians who understand the whole picture, not just the joint that happens to be hurting that week.

What is Ehlers-Danlos syndrome?

The Ehlers-Danlos syndromes are a group of inherited connective tissue disorders. Thirteen subtypes are currently recognised, with hypermobile EDS (hEDS) being by far the most common. Because collagen is the building material for skin, ligaments, blood vessels, gut wall and pelvic supports, the effects ripple far beyond the joints.

Hypermobility spectrum disorder (HSD) sits alongside hEDS. The label differs, but the symptoms and the management often look very similar. A Welsh population study of nearly 1.7 million health records put the diagnosed prevalence at around 1 in 500 — considerably more common than the textbooks once suggested, and almost certainly still an underestimate.

Why pelvic health physios see so many people with EDS

Collagen is what holds the pelvic organs in place, what gives the vaginal and rectal walls their integrity, what allows ligaments to provide passive joint stability, and what regulates the tone of the gut wall. When the raw material is structurally different, every one of those systems can struggle.

A large urogynaecological survey of around 1,300 women with hEDS reported stress urinary incontinence in 60%, urgency incontinence in 54%, sexual dysfunction in 49%, faecal incontinence in 24% and pelvic organ prolapse in 21%. Prolapse prevalence in the general population varies enormously depending on how you measure it: roughly 3–8% of women report symptomatic prolapse, around 40–50% have anatomical prolapse on examination, and the lifetime risk of surgery for prolapse or incontinence sits at 11–20%. Either way you cut it, the EDS figures sit well above the baseline.

The pelvic symptoms I see most often

Pelvic organ prolapse

Prolapse in women with hypermobility tends to present earlier, more severely and across more compartments. A 2016 meta-analysis found roughly a twofold increase in the odds of pelvic organ prolapse in women with joint hypermobility, and a UK case-control study showed objectively more severe prolapse and greater interference with sex and defecation. The connective tissue that should suspend the pelvic organs is simply less able to do its job.

Pelvic pain and pelvic girdle pain

People with EDS are at significantly increased risk of pelvic girdle pain (PGP), both inside and outside of pregnancy. The literature suggests up to 88% of hEDS patients experience PGP during pregnancy, with pelvic instability around four times more common than in the general population.

Dyspareunia and vaginal skin splitting

Painful sex is common and often dismissed. A cohort study of 386 women with hEDS found dyspareunia among the most frequent gynaecological complaints alongside heavy and painful periods. A larger international survey reported dyspareunia in 64% of respondents and probable vulvodynia in around half — more than six times the rate of the general population.

Spontaneous vaginal tearing, postcoital bleeding and recurrent skin splits at the perineum are reported by women with EDS far more often than is generally acknowledged. The tissue is genuinely more fragile, and this matters when planning childbirth, gynaecological procedures and intimate examinations.

Bladder and bowel

Constipation, slow transit and bloating are the rule rather than the exception. A retrospective study of 218 patients with hEDS found 62% had at least one gastrointestinal symptom at diagnosis, and on motility testing roughly 43% had gastroparesis. Loose connective tissue affects gut wall tone and the coordination of smooth muscle contractions. Add a hypertonic, guarded pelvic floor at the outlet and you have a perfect storm for slow, painful defecation.

The hypermobility paradox: why “tight” muscles can be a sign of instability

This is the bit that often surprises patients. You feel stiff. Your back is in knots, your hip flexors will not let go, your jaw aches and your pelvic floor feels like a clenched fist. Yet a clinician tells you that you are hypermobile.

Both can be true at the same time. When ligaments and joint capsules cannot provide passive stability, the nervous system recruits muscle to do the job instead. Muscles end up working overtime to hold joints together. That sustained, low-grade guarding is what you feel as tightness. It is a clever strategy, but an expensive one, and it tends to backfire over years.

In the pelvis, this often looks like a hypertonic, non-relaxing pelvic floor sitting on top of unstable pelvic and lumbar joints. Treating the “tightness” with stretching alone almost never helps. The body is holding on for a reason. Until that reason is addressed, the grip will return.

Why EDS is so often missed in adults

Hypermobility decreases with age. The Beighton score, the most widely used screen, will under-detect EDS in adults because tissue stiffens over time, athletes train themselves into apparent stiffness and previous surgeries can mask laxity. I have assessed plenty of patients who score 2 or 3 on Beighton today but whose childhood history reads like a textbook case: party tricks with their thumbs, sitting in W-position on the floor, recurrent ankle sprains, “growing pains,” easy bruising, frequent subluxations.

Hypermobility can also be regional rather than global. Someone with a stiff spine and hypermobile hips, shoulders and pelvis will fail the Beighton test but still have a connective tissue story worth listening to.

If childhood history, family history and multisystem symptoms point towards EDS, that picture deserves more than a shrugged “you’re just bendy.”

What helps

EDS is lifelong, but the trajectory is not fixed. The most useful things I see in clinic are:

  • Pacing and load management rather than boom-and-bust activity.
  • Strength work that respects joint position — closed-chain, controlled-range, progressive.
  • Pelvic floor down-training before pelvic floor strengthening, when tone is high.
  • Breathing and nervous system regulation, because chronic guarding is a nervous system problem as much as a muscular one.
  • Bowel management: posture, hydration, fibre tailored to the individual, and treatment of any outlet dysfunction.
  • Coordinated care: physio, GP, gastroenterology, gynaecology and, where indicated, cardiology and rheumatology.

This is genuinely interesting clinical work. With the right approach, most patients can reduce pain, regain function and stop feeling as though their body is the problem.

UK resources worth knowing

If any of this sounds familiar, the following organisations are the most credible UK starting points:

Working with us at Pelvix

At Pelvix we see EDS and HSD patients regularly across our Bristol and Bath clinics. Assessments are unhurried, examinations are gentle and trauma-informed, and treatment plans are built around your nervous system, your joints and your life rather than a protocol. If you would like to discuss whether pelvic health physiotherapy might help, you can book an appointment online or contact the clinic to speak to a member of the team.

References and further reading

This article is for information only and does not replace individual medical advice. If you suspect you have EDS or HSD, please speak to your GP or a clinician with experience of connective tissue disorders.