Bad Bladders & Worse Tech: Why We Deserve Better Than Medieval Catheters
- Antonia Kenny
- Apr 14
- 4 min read
We live in a world where cars drive themselves, AI writes haikus about heartbreak, and fridges text you when you’re out of milk. Yet somehow, catheters—the literal lifeline for millions with bladder dysfunction—still feel like they were designed by someone who thought "comfort" was a myth.
And when you throw Ehlers-Danlos Syndrome (EDS) into the mix? That’s when things really get absurd. Imagine trying to run a modern app on a floppy disk—it’s outdated tech being forced to handle a complex body it was never built for.
So let’s talk about what it’s like living with bladder dysfunction and EDS, why current treatments fall short, and how we can and should demand better.
EDS: A Crash Course in Collagen Chaos
Ehlers-Danlos Syndrome is like your body’s internal scaffolding deciding to freelance. It’s a group of connective tissue disorders that affects the stuff meant to hold you together—ligaments, skin, blood vessels, organs... you name it.
People often associate EDS with hypermobility—bendy joints and party tricks—but behind the flexibility lies a catalogue of less-visible issues. And one of the more frustrating ones? Bladder dysfunction. Yep, even your bladder has trust issues when your collagen is unreliable.
Why EDS and Bladders Don’t Mix
Bladders are supposed to be chill. Store some urine. Give a polite nudge when it’s time to go. But with EDS, it’s often more chaos than cooperation. Here’s why:
Pelvic floor dysfunction: Connective tissue weakness means the muscles supporting your bladder can’t always do their job, leading to incontinence, retention, or both. Delightful.
Dysautonomia: Many folks with EDS also deal with autonomic nervous system dysfunction. Translation: your bladder signals are about as clear as a cryptic text from your ex.
Bladder hypermobility: Just like joints can overstretch, so can the bladder wall—reducing its ability to contract properly and empty fully.
The result? Frequent UTIs, urgency, accidents, retention—and a constant game of “Where’s the nearest loo?”
The State of Catheters: Functional, but Stuck in the Past
When your bladder won’t cooperate, catheters become a necessary part of life. But "necessary" shouldn’t mean needlessly archaic. Here's what we’re still working with:
Urethral catheters: Held in place with a balloon, useful but often uncomfortable and infection-prone.
Suprapubic catheters: Inserted through the abdomen, bypass the urethra, but require ongoing maintenance.
Intermittent catheters: Used as needed, then removed. More discreet but demand obsessive hygiene.
External (condom) catheters: Mostly for men. Women? Barely on the design radar. Because of course.
Catheters do their job—but they’re uncomfortable, prone to infection, and in many cases, designed without any real understanding of what it’s like to actually use one.
So Why Haven’t They Gotten Better?
Because the bar has been set laughably low. “It works” has become the excuse for not making it work better.
Red tape: Medical devices face endless regulations, which slows progress to a crawl.
Funding gaps: EDS and similar conditions don’t attract as much research money as high-profile diseases.
Design disconnect: Many catheters are created by people who’ve never had to use one—leading to tech that’s functional on paper but miserable in practice.
It’s not just frustrating. It’s a daily quality-of-life issue. And it needs to change.
When Botox Is More Than a Beauty Treatment
If the word Botox makes you think of smooth foreheads and celebrity red carpets, you’re not wrong—but it’s also one of the more promising treatments for bladder dysfunction, especially for people with EDS-related issues.
Botox (onabotulinumtoxinA) can be injected directly into the bladder wall, calming overactive muscles and reducing the constant urge-to-pee loop. It’s especially useful for:
Overactive bladder (OAB)
Neurogenic bladder
Bladder spasms linked to dysautonomia
What it does:
It blocks the nerve signals that cause involuntary bladder contractions. Think of it as teaching your bladder to stop yelling when it’s not actually full.
What it helps:
Less urgency
Fewer leaks
More control over your own body (for once)
But fair warning:
It’s temporary (6–9 months on average)
It can cause urinary retention in some people (meaning you might need to self-catheterise)
You may be at higher risk of UTIs right after treatment
For many, though, it’s life-changing. Especially if you've hit the point where meds don’t work and catheters are the daily norm. And while it’s not a cure, it is a real step forward.
The Power of Patient Advocacy
The EDS community is no stranger to self-advocacy. We’ve had to be loud, persistent, and occasionally very creative to get our needs heard. Organizations like The Ehlers-Danlos Society and Bladder Health UK are helping lead the charge—but real change also comes from us. From lived experience. From stories. From not letting this stuff stay invisible.
What You Can Do
If you’re living this reality, or love someone who is, here’s how to keep the momentum going:
Speak up: Whether online or with your doctor. Your story matters.
Support advocacy groups: They amplify our voices and push for funding.
Push policy: Contact MPs or healthcare trusts. Ask what they’re doing to support better medical tech for chronic illnesses.
Final Thoughts: Why We Deserve Better
Living with EDS is already a full-time job. Add in bladder dysfunction and outdated tech, and it’s exhausting. But we don’t have to settle. Catheters shouldn’t feel like instruments of medieval punishment. Bladder care shouldn’t feel like an afterthought. And innovation should absolutely include comfort, dignity, and design that reflects actual lives.
We’ve got smartwatches tracking our heart rates and apps reminding us to drink water—surely it’s not too much to ask for a catheter that doesn’t feel like it was dreamt up by a 19th-century battlefield medic.
Here’s to the future—where dignity, comfort, and innovation aren’t optional.
Further Reading & Sources
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