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Incontinence Woes Only People With MS Will Understand

Written by Francie MacDougall
Posted on April 1, 2022

A few years ago, I brought my daughter to a birthday party and struck up a brief conversation with the birthday girl’s grandmother. After a polite question about what she did as a career, she mentioned that she worked at the local hospital and that incontinence was a scourge for more people than the world understood. Her comment was so out of the blue, I was stunned. I had not yet arrived at the pee-emergency stage of my multiple sclerosis. Did she know something?

Since then, I think of her seemingly random words often, because I’m now at the pee-emergency stage. As far as I can tell, there are no quick fixes or magic pills to solve the incontinence issue. There are pills, like tolterodine (Detrol) and mirabegron (Myrbetriq) to name just two, and therapies, like meditation and Kegel exercises. There are procedures, such as Botox injections, surgeries, and nerve stimulation, and of course pads, adult diapers, or catheters. And they work with varying degrees of success.

I’ve tried everything except the procedures, mostly because things are fine-ish on my good days, and I’m waiting for things to get really bad.

But I do have my own standard game plan. For example, every time I enter a business, I scout out the nearest bathroom, just in case. I regulate my caffeine and general liquid consumption before I go somewhere if I don’t know the bathroom logistics. And every day, I try to get my 60 ounces of liquid in at least four hours before bedtime. But I never go out in public without protection, be it a pad or diaper.

I’m doing all of this with the assistance of the continence clinic at the nearby hospital. I see a nurse practitioner who asks me questions, reminds me about strategies, measures the liquid in my bladder, and maybe more importantly, takes the shame factor out of this indignity.

There are lots of people who have some sort of incontinence issue at some point in their lives. It is a reality. I’m guessing the sense of embarrassment comes from our early potty training days, when shame was an incentive to control the bladder and bowel. Today, I remember when I got my period in high school and was afraid of leaking or, worse, having someone detect a pad through my jeans.

So I wear dresses, skirts, or tunics over leggings to take care of potential issues. These also make going to the bathroom easier if I’m wearing an ankle-foot orthosis on my right foot, and I need to change my underwear.

I consider incontinence a grim reality of my multiple sclerosis journey. But the end goal remains the same: Defy the scourge and keep finding workarounds when resolutions or cures are not available … yet. Hopefully, cures are on the horizon, but until then, we all have our strategies.

MyMSTeam columnists discuss multiple sclerosis from a specific point of view. Columnists’ articles do not reflect the opinions of MyMSTeam staff, medical experts, partners, advertisers, or sponsors. MyMSTeam content is not intended as a substitute for professional medical advice, diagnosis, or treatment.

Posted on April 1, 2022
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Francie MacDougall is a freelance writer who lives in Birmingham, Alabama. She was diagnosed with MS in 1990. Learn more about her here.

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