MS bladder issues: the power of talking

21 May 2024

Accessible toilet

Battling MS bladder issues, Heather sought support from the MS community. Find out how opening up to others changed her perspective.

Living with multiple sclerosis presents a myriad of challenges, both seen and unseen. Among the many symptoms I navigate on a daily basis, one of the most unpredictable and frustrating is my struggle with bladder control.

I'm 47 years old and was diagnosed at 37 with rapidly evolving RRMS. I was put on Tysabri and then moved to Cladribine, and I am currently in my 5th year of that.

I've diligently cared for my pelvic floor muscles since my 20s. But thanks to the joys of motherhood, the onset of MS brought forth a new set of bladder-related issues that I never anticipated. Unlike the gradual weakening of pelvic muscles often associated with childbirth, my bladder problems stem from the unpredictable nature of MS itself.

One of the most unsettling aspects of my bladder issues is the sudden, overwhelming urge to urinate.

It can strike without warning, leaving me scrambling to find a toilet in time. Despite my best efforts to plan ahead and stay vigilant about my fluid intake, there are moments when I simply cannot control the urgency.

These episodes don't occur every day, which adds to the unpredictability and challenge of managing this aspect of my MS. It's not just about finding the nearest toilet; it's about dealing with the embarrassment and frustration of potentially wetting myself in public.

What makes this symptom particularly challenging is that there's nothing wrong with my pelvic floor muscles. I've done my homework, practiced pelvic floor exercises religiously, and sought guidance from healthcare professionals to ensure that I'm doing everything in my power to maintain bladder control.

And yet, despite my best efforts, MS has its own agenda.

Living with bladder issues due to MS requires a combination of resilience, adaptability, and self-compassion.

It's about learning to navigate the ups and downs, the moments of triumph and the setbacks with grace and patience.

For anyone else grappling with similar challenges, I want you to know that you're not alone. While the journey may feel isolating at times, there is a community of individuals who understand what you're going through and are ready to offer support and solidarity.

I would urge anyone out there who’s experiencing MS bladder issues to reach out to the MS community.

There will be others who know what it’s like to wrestle with MS bladder issues.

Plus, there’s so many treatments and strategies out there. The more you talk to others, the more you’ll know. Even though I haven’t found the right one for me yet, I’ll keep searching, keep talking, keep raising awareness. You are not alone.

To those who may not be familiar with the complexities of living with MS, I hope this glimpse into my personal experience sheds light on the often-invisible struggles faced by individuals with this condition.

It's a reminder that empathy, understanding, and compassion can go a long way in making the world a more inclusive and supportive place for everyone.

As I continue to navigate the ups and downs of life with MS, I'm grateful for the opportunity to share my story and raise awareness about the realities of living with this condition.

Together, we can break down barriers, challenge misconceptions, and build a more inclusive society for all.

Remember, we're stronger together.