Bladder Dysfunction and EDS: The Most Inconvenient Truth

Ah, the bladder. That humble, bean-shaped organ we all take for granted—until it decides to mutiny. For most people, a full bladder means a quick dash to the loo, some satisfying relief, and back to life as usual. For those of us with Ehlers-Danlos Syndrome (EDS), however, it’s not so much “nature calling” as it is nature ghosting you mid-conversation.

Let’s be honest: peeing is supposed to be easy. It’s one of the first things we master as toddlers—right after “don’t put that in your mouth” and “yes, you really do have to share.” But when your connective tissue has the tensile strength of overcooked spaghetti, even the most basic bodily functions can turn into an ordeal. Imagine sitting on the toilet thinking, “Anytime now… nope, still nothing,” while your bladder lounges somewhere in your abdomen with a cocktail, fully ignoring your pleas.

Bladder Dysfunction: The Worst Unwanted Houseguest

Let’s pull back the shower curtain, shall we? Bladder issues in EDS don’t get nearly the attention they deserve. Why? Probably because no one wants to dive into a heartfelt discussion about urination at brunch. But here’s the thing: these problems are common, under-discussed, and seriously disruptive.

Here’s the greatest hits album of bladder betrayal:

• Urinary Retention: You need to pee, but your bladder is basically ghosting you. It’s there. It’s full. It’s just... not participating.

• Overactive Bladder: Your bladder has no chill. It wants to empty, constantly—during long car rides, important meetings, or the exact moment you lie down to sleep.

• Frequent UTIs: Because if you’re not emptying properly, your bladder becomes the bacterial equivalent of an Airbnb with no cleaning service.

Add to that the EDS bonus features: pelvic organ prolapse, autonomic dysfunction (like POTS), fragile tissues, and an anxious nervous system constantly throwing signals like it's playing dodgeball. It’s not just uncomfortable—it’s exhausting.

When Your Bladder Becomes an Unwilling Hostage Negotiator

Let me get personal—because textbooks won’t tell you this, but someone needs to.

For me, I cannot pee. I have what’s been described as a large, overstretched bladder—like a balloon that’s been blown up too many times and forgotten how to bounce back. When my brain finally gets the “It’s time to pee” notification (usually after hitting snooze for hours), I dutifully make my way to the loo… and then? Nothing.

There’s pressure. There’s discomfort. It feels eerily like the start of a UTI—minus the razor-blade pain—but the result is the same: a stubborn bladder playing dead.

So, I sit there for 20, sometimes 25 minutes, trying every trick in the unofficial “Bladder Dysfunction Survival Guide”:

• Rocking back and forth

• Massaging my lower abdomen

• Turning on the sink tap, hoping the sound of running water will inspire a sympathetic release

• Bargaining with the bladder gods

Eventually, if I’m lucky, I’ll pass a little bit—but it’s a race against time. I have to force it out quickly before my bladder decides it’s done and slams the door shut again.

Let me be clear: spending 20 minutes just trying to pee is not normal, and it is not okay. But when you live with EDS, this kind of dysfunction becomes part of your daily routine—something you don’t talk about but constantly accommodate.

“Well That Doesn’t Look Good”: The Moment No One Prepares You For

During a test to visualize my bladder in all its glory (because what’s more glamorous than that?), I was both shocked and surprised to see lots of red patches throughout. I looked at the urologist and said:“Well, that doesn't look good—what are all those red patches?”He replied, “Oh, those are just burst blood vessels. Nothing to worry about.”Right. Nothing to worry about. Just spontaneous internal bleeding in a vital organ. Excellent.

But that moment stuck with me. I’ve often wondered: is this a direct reflection of EDS? Given that our connective tissues and blood vessels are inherently more fragile, it feels like more than just a coincidence.

And it turns out—there’s science to back up the suspicion. In certain forms of EDS, especially vascular EDS (vEDS), blood vessels are significantly more prone to rupture, bruising, or bursting under pressure. While hypermobile EDS (hEDS) doesn’t always get lumped into that category, studies have shown that fragile vasculature is not uncommon across the spectrum.

Resources:

• EDS Society: Bladder & Bowel Dysfunction

• Bladder & Bowel UK: EDS and Continence Guide (2021)

• BJOG: Pelvic Floor Disorders in EDS

• Side-by-Side: vEDS and hEDS Compared

  
  

Bladder Dysfunction in Public and Professional Life: The Silent Crisis

Now imagine trying to live like this in a social or work environment. You excuse yourself to the bathroom—then you’re gone for 20 minutes. People notice. Meetings get awkward. Friends start side-eyeing. You emerge flustered and in pain, praying no one comments on your absence. The anxiety alone is enough to make your bladder seize up even more.

And then comes the dreaded question:“Everything okay in there?”Answering honestly—“Well actually my bladder staged a coup and now I’m negotiating with it using abdominal percussion and psychological warfare”—somehow doesn’t roll off the tongue.

Whether you’re:

• Working full-time and navigating tightly scheduled breaks,

• Socialising and pretending to be fine while mentally mapping toilet access, or

• Traveling with the intensity of a military strategist…

…bladder dysfunction isn’t just inconvenient. It’s invisible, anxiety-inducing, and emotionally exhausting.

What Can Actually Help?

Let’s not end on a total downer. While this isn’t an easy condition to treat, there are some things that can help:

• Pelvic floor physiotherapy (preferably with someone EDS-savvy)

• Bladder retraining and timed voiding

• Medications like anticholinergics or beta-3 agonists

• Self-catheterisation (not fun, but sometimes life-changing)

• Seeing a urologist/urogynecologist familiar with EDS—rare, yes, but worth the hunt

• Support groups, both online and in-person, where you can stop feeling like the only person Googling “how to pee faster” at 3 a.m.

  
  

Final Thought

Bladder dysfunction is often dismissed as “just one of those things,” but let’s be honest: this is not minor. It’s not quirky. It’s a major daily battle—and one that deserves to be taken seriously.

So to everyone out there spending 25 minutes in the loo, rocking gently, humming under your breath, and trying to convince your bladder to do the most basic thing: you are not alone. You’re not lazy, weak, or dramatic.

You’re just fighting a hidden battle with faulty wiring—and you’re doing it with more courage, and resilience than most people will ever know. Stay strong my friends and be kind to yourself.