Living with a suprapubic catheter has completely changed my life. From dealing with spasms and infections to learning how to adapt at home, it’s been a journey of pain, growth, and unexpected freedom.
So, the other day I stumbled across a video of a girl talking about her suprapubic catheter. She shared how she gets these extreme bladder spasms, and the only way to calm them is to literally sit on the toilet so her body thinks it’s going. I sat there watching like, oh my word, that’s me! Then I started reading the comments, and suddenly it was like this hidden world opened up—so many women sharing their own experiences.
It honestly made me stop and think: why haven’t I ever shared my story?
Truth is, in the beginning I was so embarrassed. I felt gross. And for a long time, I didn’t want to talk about it. But now that it’s been just over a year since I got mine, I feel ready. Because while it’s still hard sometimes, I’ve also learned how strong and beautiful I am through this journey.
The Hardest Part of Living with a Suprapubic Catheter
If I’m being really honest, this has been the hardest thing I’ve done in a long time. It was emotionally draining and physically painful, and I don’t think I fully understood just how much it was going to change my life.
There were days in the beginning where I cried because I hated it. Days where I felt so broken and so different that I didn’t even want to look at myself. And yet… through all of that, I’ve discovered a whole new kind of freedom.
Having a suprapubic catheter is not something anyone wants. But it has given me more independence, more comfort, and a chance to live life with a little less struggle. It’s not perfect—far from it—but it’s opened up a world I never thought I’d get to experience.
Learning to Change My Suprapubic Catheter at Home
Okay, so here’s the scary part: we don’t even go to the hospital for changes anymore. My boyfriend (yes, my absolute hero) decided he was going to learn how to do it. From scratch. We now have all the equipment at home, and every 6–8 weeks we tackle it together.
I won’t lie—it still really hurts. And it’s terrifying sometimes because it’s not an exact science. You have to kind of “feel” what’s happening. And putting that level of trust in someone who isn’t a doctor? That’s huge. But we’ve figured it out. Well… except for the one time it didn’t work out, but that’s a story for another day.
Spasms & Infections: The Toughest Bit
In the beginning, the spasms nearly broke me. They were constant, they were debilitating, and nothing seemed to help. Sometimes lying down made it worse, so I’d literally fold myself over just trying to find relief. Eventually, I was put on medication—and wow. Life changing. The spasms calmed down, and I could actually breathe again.
Then came the infections. Before the catheter, I had never had a UTI. Then suddenly, I had nine in three months. Nine! It felt like I was constantly on antibiotics. Eventually, they put me on a low-dose antibiotic for about nine months, and together with stricter cleaning routines and more regular changes, things finally started to settle.
Everyone’s Story is Different
Here’s something I’ve learned: there’s no one-size-fits-all with a suprapubic catheter. Honestly, it reminds me a lot of living with a rare disease—everyone’s body reacts differently, and what works for me might not work for someone else.
That’s why sharing stories is so important. Doctors don’t always have the answers (shocking, I know), but other people living it often do. Hearing tips and tricks from others who get it has made me feel less alone and way more empowered.
Little Adaptations, Big Difference
Over the past year, we’ve had to make all sorts of little tweaks to daily life:
- Using bigger bags on my wheelchair so they last longer.
- Finding plasters that actually stick (you’d think this would be easier!).
- Swapping out underwear and clothes so I feel more comfortable.
- Adding a flushing product to reduce buildup.
They’re small changes, but together they’ve made a huge difference.
Still Beautiful, Still Strong
If I could go back and talk to the version of me who first got this catheter—the girl who felt ugly and embarrassed—I’d say: Babe, it gets better. It always does. This is just a bump in the road, and you’ve tackled way bigger things before.
And honestly, people don’t notice the things we stress about. They don’t care what your stomach looks like or whether you’ve had to change your underwear style. They care if you’re kind, funny, and someone they love being around. That’s what matters.
My friends, family, and support system remind me of this daily. They remind me that strength isn’t about doing it alone—it’s about leaning on the people who’ve got your back.
So yeah, having a suprapubic catheter is messy. It’s painful. It’s frustrating. It’s also the hardest thing I’ve faced in years. But through that pain and exhaustion, I’ve gained something unexpected: freedom.
It’s not just about the medical side—it’s about getting a part of my life back. A chance to live with a little less struggle, a little more independence, and a whole lot more strength than I knew I had.
I’m still beautiful. I’m still strong. And I’m still me.
If you’re on this journey too—please know you’re not alone. It’s hard, but it does get better. And along the way, you’ll discover a new world of freedom waiting for you too.
