In 40 years of dealing with multiple sclerosis symptoms, few have been more limiting or more difficult to talk about than incontinence, the occasional loss of control of my bladder. Those symptoms are better now, but it has been a challenging road to get here.
Bladder function problems afflict many people with MS. Urologists say most MS patients will get bladder symptoms (called lower urinary tract symptoms or LUTS) if they reach the progressive stage.
Bladders need a lot of nerves to work well. That’s why toilet training is such a big project for toddlers; they have to learn how to hold urine, how to recognize when they need to go, how to push urine out, and how to stop. MS can damage the nerves needed for those functions.
Early on, people may notice they can’t hold as much urine. That was my first MS symptom in 1979, though it took years to realize what was going on. I felt like I had to pee much of the time (called reduced storage or increased frequency), which changed my life in unhealthy ways.
I limited my fluid intake so I wouldn’t have to go so often, so I sometimes got dehydrated. To go places on foot or by public transportation, I had to figure out where I could find bathrooms along the way. Even indoors, I sometimes needed to stay close to the bathroom.
Eventually, that wasn’t always good enough, and I would wet my clothes or the floor, especially as my mobility got worse and I needed longer to get on the toilet.
Along with reduced storage, MS can cause bladders to fail to empty completely. It can be difficult to start your stream; the flow might be weak and dribbly, and too much urine might be retained instead of pushed out. Urinary retention increases frequency and brings a high risk of urinary tract infections (UTIs).
Progression of LUTS
After some years of progression, I had to start wearing absorbent undergarments for times I couldn’t get to the toilet, which gradually became most of the time. Undergarments cost money; they’re not compostable or recyclable, and they tended to give me skin rashes. So that was unpleasant.
My LUTS continued to progress, to where incontinence wasn’t as much of a problem as retention. Having a full bladder much of the time leads to UTIs -- urologists say it is like a stagnant pool instead of a clear-running stream -- and puts damaging back pressure on the kidneys. My doctor said I should start a practice of catheterizing myself four to six times day to relieve the pressure.
Self-cathing turned out easier than I had feared, since I have halfway decent upper body strength and control. Because of anatomy, self-cathing is much easier for men than for women, but I know women who do it successfully, too. It doesn’t hurt, and I no longer had to wear undergarments or stay close to bathrooms. But it’s an undeniable drag, and the equipment costs money.
Here are some things doctors and the MS Society advise for improved bladder control. Some of them helped me; others didn’t.
- Pelvic floor exercises. Called Kegels, they are the same ones women do after pregnancy. Rebuilding bladder muscles can prevent spills.
- Fluid intake. Limit caffeine and alcohol, and maintain adequate fluid intake during the day. Don’t drink fluids before bedtime so you won’t need to pee as often. Skipping water during the day doesn’t keep your bladder from wanting to go, and it creates more risk of UTIs.
- Diet. Urologists say more acidic urine prevents UTIs, which will prevent incontinence. There are diet lists online for acidifying urine, and most say avoid most fruits and sweet drinks.
- Medications. A neurologist or urologist can prescribe meds both to increase bladder storage and prevent incontinence. They never worked for me, but you can ask your doctor. There are medicated skin patches that might help.
- Bladder training. Time yourself and urinate regularly, like every 2 hours. Don’t wait too long. The idea is to get the bladder used to a rhythm.
- Avoid constipation. The bladder and the rectum are very close to each other, so either one being full puts pressure on the other. MS can cause constipation, which will make urinary symptoms worse. To prevent constipation, eat more fiber, drink more liquids, and move your body as much as you can. Take stool softeners as necessary.
Don’t be shy about telling your doctor about incontinence problems. They have heard it all before. It is nice to have a loved one you can talk to. An MS support group can give emotional support and good coping strategies. The National MS Society has a couple of good pages on managing bladder and bowel problems.
To connect with other people living with multiple sclerosis, join WebMD's MS Facebook Support Group.
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