Bladder dysfunction: The NMOSD plot twist that nobody wants

Everyone has embarrassing moments from time to time, but a neuromyelitis optica spectrum disorder (NMOSD) embarrassing moment is on another level. One of these happened to me 16 years ago, during my first transverse myelitis attack, when I could no longer feel my bladder.

You’d think that would be an important thing for those on my medical team to mention, but at the time, they were hyperfocused on what was wrong with me, not all the symptoms I might face.

I was in my hospital room trying to be a polite, functioning human in front of my future mother‑in‑law, who had come for a visit. I swung my legs out of bed to shuffle to the bathroom and instantly peed myself without warning. I didn’t feel any sensation, other than urine running down my legs, filling my soft slippers.

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My future mother‑in‑law saw the whole thing and didn’t react at all — not a gasp, a grimace, or even a raised eyebrow. She simply excused herself and gave me privacy. I spent the entire evening worrying that she’d tell my fiancé to reconsider our upcoming nuptials.

The next day, she arrived with a giant bag of menstrual pads. There was no commentary or awkwardness, just a silent, supportive offering. It was both mortifying and heartwarming at the same time. My spine and bladder eventually recovered from that transverse myelitis attack, but from that day forward, I constantly worried about it happening again.

I’m not canceling joy

Bladder dysfunction is incredibly common in NMOSD. When inflammation hits the spinal cord, the nerves that control your bladder can go offline like a teenager ignoring chores. Some people lose sensation, while others lose control. Some experience both, which is the neurological equivalent of a buy one, get one free deal that nobody asked for.

What’s wild is that despite having multiple transverse myelitis attacks over the years, I’ve only recently started dealing with bladder issues again. After 16 years of dodging the bladder bullet, suddenly my body said, “Surprise! Let’s throw in a weak bladder for extra fun!”

Let me tell you, the timing is terrible. Not only am I dealing with occasional daytime urgency, but I’m also waking up several times a night to pee. My sleep schedule is now a series of naps interrupted by bathroom trips. I’ve become a nocturnal creature with a Fitbit sleep score that screams, “Are you OK?”

This week was our annual trip to Canada’s Wonderland, just north of Toronto, a tradition I adore. But this year, my bladder had other plans. I’ve been frequenting the bathroom so often lately that I could probably lead guided tours of public washrooms throughout downtown Toronto.

So, naturally, I worried about waiting in long roller coaster lines and suddenly needing to pee. I also worried about the roller coasters themselves, because nothing says “thrill ride” like wondering if a 200‑foot drop will shake loose more than just adrenaline.

I am far too young (and far too vain) to wear protective undergarments under leggings. I refuse to add bulk where bulk does not belong. I want to ride AlpenFury, not feel like I’m wearing a mattress.

So I did what any NMOSD patient with bladder drama would do: I made a mental map of every bathroom in the park. I could’ve drawn a topographical diagram. I knew distances, walking times, and which ones had the shortest lines. If bladder management were an Olympic sport, I’d win a medal.

And you know what? I still went. I still rode the rides. I still had fun, because NMOSD may complicate things, but it doesn’t get to cancel joy.

How to address bladder issues

Bladder dysfunction may be common in NMOSD, but I don’t think it’s something you “just have to deal with.” Here are some practical tips:

• Tell your neurologist or primary care provider about it. Bladder symptoms can signal inflammation, nerve damage, or infection. They matter.
• Ask for a referral to a urologist or neurourologist. These folks specialize in bladder issues caused by neurological conditions.
• Request a bladder scan or urodynamic testing. These tests help determine whether the issue is urgency, retention, incomplete emptying, or something else.
• Discuss treatment options. These may include medications, pelvic floor therapy, timed voiding, or other strategies tailored to NMOSD‑related dysfunction.
• Don’t ignore nighttime symptoms. Frequent nighttime urination can affect sleep, mood, and overall health — it’s worth addressing.
• And most importantly, don’t be embarrassed. This is a neurological condition, not a personal failure.

Living with NMOSD means adapting, laughing, and occasionally planning your day around bathroom access like it’s a tactical mission. But it also means resilience. It means finding humor in the chaos. It means remembering that even if your bladder betrays you, it isn’t your fault.

If I can survive peeing in front of my future mother‑in‑law, trust me, you can survive anything your bladder throws at you, too.

Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder.