Bladder Problems Keep Many of Us Looking for the Loo

Bladder Problems Keep Many of Us Looking for the Loo
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Are you frequently up at night for bathroom trips? When you’re outside, are you always looking for a loo? You’re not alone. A recent study confirms that the vast majority of people with multiple sclerosis are dealing with bladder problems. You probably know the symptoms: They include having to urinate frequently, incontinence, dribbling, or not being able to empty your bladder completely. Sometimes, those lower urinary tract symptoms can be the first sign of MS. Often, they bother us for years.

The study of about 600 people with MS was published in BMC Neurology. The most common symptom reported was producing too much urine overnight (nocturnal polyuria), troubling 59.3 percent of study participants. It was followed by urgency (57.1 percent), hesitancy (39.7 percent), intermittent urine flow (36 percent), and the feeling that the bladder hasn’t been completely emptied (43.2 percent). At one time or another, I’ve had each of these. (I call my intermittent flow “urinating in Morse code.” It flows in dots and dashes.)

Does age, gender, or MS type make a difference?

I wasn’t surprised to learn that mild bladder problems were more common in those with clinically isolated syndrome and relapsing-remitting MS. Moderate symptoms were found in slightly more than half of those with progressive forms of MS. Moderate and severe symptoms increased with age. Men and women reported similar rates of lower urinary tract symptoms, but their symptoms varied slightly. Women reported nocturia (61 percent), urgency (58 percent), and incomplete bladder emptying (42.6 percent) most frequently. Men reported hesitancy (54.7 percent), urgency (53.9 percent), and nocturia (53.1 percent) as their top three.

What can we do about it?

I’ve used extended-release Ditropan (oxybutynin) for years with varying results. Some people receive Botox injections into their bladder. Some self-catheterize. Others rely on absorbent underwear and keeping track of the location of the closest loo. (There’s an app for that.) I think my current disease-modifying treatment, Lemtrada (alemtuzumab), may have helped me more than anything else. It’s been nearly two years since I completed the second round, and within the past month or two I’ve been doing much better at controlling my bladder. I’m only waking once between 11 p.m. and 7 a.m. to urinate. I used to get up two or three times. I can spend four or five hours outside without having to make a dash to the men’s room. Oh, what a relief that is.

Do you have a treatment, traditional or nontraditional, that has helped your bladder control? I’d like to know what’s worked for you.

Did you know that some of my columns from “The MS Wire” are now available as audio briefings? You can listen to them here. You’re also invited to visit my personal blog at www.themswire.com.

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Note: Multiple Sclerosis News Today 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 provider 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 Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Ed Tobias is a retired broadcast journalist. Most of his 40+ year career was spent as a manager with the Associated Press in Washington, DC. Tobias was diagnosed with Multiple Sclerosis in 1980 but he continued to work, full-time, meeting interesting people and traveling to interesting places, until retiring at the end of 2012.
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Ed Tobias is a retired broadcast journalist. Most of his 40+ year career was spent as a manager with the Associated Press in Washington, DC. Tobias was diagnosed with Multiple Sclerosis in 1980 but he continued to work, full-time, meeting interesting people and traveling to interesting places, until retiring at the end of 2012.

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9 comments

  1. Kara says:

    I recently had a 5 day trial of sacral neuromodulation. Temporary leads were placed under local anesthetic by a urologist specializing in this procedure. I used the unit for 5 days for this “trial period” and will have a permanent one inserted later next month. It was successful in stopping urinary and bowel urgency (as both often occur).

  2. Kara says:

    Above was edited and left out very important information. This sacral neuromodulation is old technology, but the newer units are MRI compatible. This is very important to know, as implants often exclude a person from having an MRI.

  3. Carolyn Walsh, MSN, RN says:

    It’s always helpful to know that there are others with MS who share the same bladder problems that you have. I loved the phrase “urinating in Morse code”, which describes it accurately, and made me smile.
    I’m on Myrbetric but still getting up every 2 hours at night.
    Two hours or (150 ml) appears to be my bladder capacity. I haven’t tried anything else. I’m tempted to try the Ditropan because at least it will be cheaper than the Myrbetric which is the newer drug.
    I’m on several drugs that cost $45 dollars a month, and an inhaler that can be even more than that, depending on the drug cycle I’m in.
    At the beginning of the year, you are starting from scratch, until you’ve built up to your deductible and the prices then go down.
    If I see others on this blog that are on the Ditropan with some degree of success, I’m going to ask my urologist to change mine.
    Thanks for sharing your information and experiences!

  4. KATHY BALL says:

    I have had MS for over 30 years. I can’t walk and I still work, so I use a scooter to get around.

    Anyway, I take a vesicare tablet twice a week. I used to take a tablet once a day, as prescribed, but it seems to work better on an infrequent basis.

    I “schedule” my bathroom breaks. If I have no urge, I still go every 2 to 3 hours in the daytime. On a trip from Atlanta to London, my doc suggested taking a vesicare the night we flew out and to take one 12 hours later. It worked perfectly. Thus, when I travel, I take one the night before and then I take one the morning before we leave. It has allowed us to travel comfortably. We still stop every couple of hours, but I am not racing upon my scooter to get to the restroom.
    Sometimes my body wants to go every hour (rarely) in the daytime, so everything is not perfect, but it is rare and I just deal with it.

    I also think focusing on exercises for the core abdominal exercises, prescribed by a physical therapist, helps.

    • Ed Tobias says:

      Thanks for the tip, Kathy. Vesicare is a med that I’ve never thought of. I travel quite a bit, so I’m going to look into it.

      Oh, and I have no doubt that strengthening my core helps.

      Ed

  5. Steven Valli says:

    Hey Ed,

    Unfortunately, I am very familiar with all that you’ve described. About ten years ago my neurologist suggested I start seeing a urologist concerning bladder control. My uro has me taking Mybetriq, Vesicare, and Rapaflo. The combination of these 3 meds has helped, though I am still getting up 3 to 4 times a night.

    I am also an AP alum. I met you back in 2002 in the 7th floor Board Room at 50 Rock. You and Brad were in NYC to help us with the SAP project. I went on LTD in 2009 but am still in touch with my AP friends. It was a great place to work.

    I have subscribed to The MS Wire for several years now. It’s always interesting and useful. Thanks so much.

    Steve

    • Ed Tobias says:

      Hi Steve,

      Great to hear from you and I’m glad you like The MS Wire. Wow, the SAP system is a real blast from the past…almost from a different century! I retired at the end of 2016. It wasn’t on disability but it was time for a change.

      I’m sorry to hear that you’re a member of the MS club. There are two other members who’ve been working in WDC for many years. You never know who’s who, with our sometimes invisible disease.

      Bladder problems are crazy. I’ve had two or three weeks of only getting up once in the middle of the night. Two nights ago I slept through the night, nearly 8 straight hours. Then, last night I was up three times. Awrghhh!!!

      Regards,

      Ed

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