a cartoon bladder spills out

Bladder Issues, Ladies?

Last updated: March 2022

One of the most common symptoms we, women living with NMO, suffer from is recurrent UTIs (unitary tract infections) due to many reasons. Whether an overactive bladder, bladder retention, or having a neurogenic bladder, it's all very difficult to manage but can be with the correct treatment.

My first symptom of NMO

One of my very first symptoms were bladder incontinence and frequent UTIs. I was peeing my pants the instant I felt the urge to use the bathroom. UTIs were (and still are) a common occurrence from the very beginning of my NMO journey. I would often leave work because I had no control of my bladder and wet myself constantly. I started using bladder pads to help prevent embarrassing moments while I was out and about.

It was unclear why I was having these issues

During this period of my life, I was also visiting a urologist and having my bladder tested. It was thought that my bladder might be having issues because I'd given birth naturally. I was prescribed many medications, and I was even referred for pelvic floor therapy (Who knew that was a thing? I sure didn’t at the time). At this point, I was wearing adult-size diapers because medications weren’t working for me and UTIs were becoming more frequent.

They wanted me to do what?!

When my urologist saw I was still having trouble with my bladder even after being diagnosed with NMO, he insisted I try self-catheterizing. YES, you read that correctly: self-catheterizing! My neurogenic bladder had me urinating up to 6-8 times per night. My days were horrible; I was so cranky and rude. It was the most difficult task to learn, but after a few tries and correct instructions, I was at least getting a few hours of sleep at night.

I eventually got the hang of it

Once I got the hang of using disposable catheters, I was able to get some sense of normalcy back. But as time passed, my bladder issues got worse, and my UTIs were ramping up again. The next step was to try Botox on the bladder. Believe it or not, that was a game-changer! Botox on the bladder meant that my overactive bladder would calm down from spasming and would give me longer rest periods in between every bathroom break. I was a bit nervous but willing to try anything at that point.

Finally: a solution!

Ladies let me tell you: when I say that I was able to sleep a full eight hours at night all because I got Botox to the bladder, I was so happy and relieved. I couldn’t believe that it worked for me. Still to this day I get the injection every six months. It’s a part of my treatment plan because it truly gave me back some quality of life I had lost: sleep.

"An educated patient is an empowered patient"

We warriors go through a lot with NMO, but ladies and gentlemen, when it comes to your bladder, don’t limit yourself. Open up and consult a urologist to determine what the best treatment plan would be for you. Like I always say: an educated patient is an empowered patient.

A quick side note

Before Botox to the bladder, I sat during a whole concert in an over-flooded adult size diaper, wet all the way down to my knee. It was hard for me to walk because I was already having spasms in my legs and the bathroom was too far. I enjoyed the concert and did not care about NMO or my bladder that night. More so, I wasn’t embarrassed either because my friends knew what I was going through and understood me. I wasn’t judged or ridiculed, but more inspired than ever to live my life. It was by far one of the best nights of my life!

Has anyone else experienced NMO-related bladder issues?

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Neuromyelitis-Optica.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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