With so many treatment strategies available, there’s a solution for almost everyone.
by Aviva Patz
Let’s talk about pee. Seriously.
You may think hitting the bathroom three times during the night, leaking a few drops here or there or feeling unable to go are things you just have to cover up and live with as best you can; if so, think again. Bladder problems affect 75 to 90 percent of people with multiple sclerosis, according to a July 2014 in-depth report in MS in Focus, published by the Multiple Sclerosis International Foundation (MSIF). “Patients need to understand that bladder issues are a symptom of their disease process and not something they should be embarrassed or ashamed about,” says Dr. Marlene Murphy Setzko, a urologist and director of Urologic Services at the Mandell Center for Comprehensive MS Care in Hartford, Connecticut.
That said, it’s understandable that these symptoms are extremely distressing. “One of the first things we learn as infants is how to control our bladder, so losing that ability can dash our self-esteem,” says psychologist Rosalind Kalb, PhD, vice president of Clinical Care at the National MS Society. “It’s hard to present yourself to the world when you’re worried you’re going to wet your pants.”
Perhaps even worse, bladder problems can be debilitating, potentially leading to depression, social isolation, poorer performance at work, skin breakdown, infections and a greater likelihood of needing to move to an extended care facility.
In spite of the discomfort and disability this issue can cause, many people hesitate to seek help. They shouldn’t.
“Seeing and reading all the ads for bladder issues made me think that it was normal,” says Claire P., of Annapolis, Maryland, who was diagnosed with MS in 2001. In fact, while it’s not “normal,” it is common.
In MSIF’s July 2014 survey of more than 3,500 people living with MS in 73 countries, more than a third of those who hadn’t been tested for urinary problems also had not brought up the topic with their neurologist. A quarter said they preferred to manage the symptoms on their own, and another quarter who had not been treated said their neurologist thought testing was unnecessary.
Clearly, bladder issues in MS are under-recognized, underdiagnosed and undertreated. “Patients are often shocked to learn that urologists with an interest in MS actually exist, and that essentially, there is a solution to every bladder problem—and that solution doesn’t have to include adult diapers!” Dr. Murphy says.
Read on to learn what bladder difficulties in MS look like and why they happen, plus the newest treatments and real-life coping mechanisms.
“Taking the steps that will help you get this essential bodily function under control is critically important,” Dr. Kalb adds. “Talking with your doctor or nurse is the first step to finding the right solutions.”
The what and why of symptoms
The bladder has two main functions—to store or hold urine, and to empty effectively. But in people with MS, this often doesn’t go as planned. Why? Chalk it up to miscommunication. We know that in MS, myelin—the fatty substance that surrounds and protects nerve fibers—is damaged. When myelin is compromised, signals traveling along nerve fibers to and from the brain and spinal cord get garbled. “It’s like the game ‘telephone,’ ” Dr. Murphy says. “By the time the word gets to your bladder, it doesn’t know what the word is or what to do.”
When it comes to storage problems, the most common symptoms, collectively called “overactive bladder” (OAB), include:
- Urgency and/or frequency—the sudden and intense urge to urinate. This may occur even if you just went 10 minutes ago. These symptoms can come from involuntary contractions of the bladder that your willpower is unable to override. They may be triggered by touching or hearing running water, or by passing a bathroom.
- Incontinence—not being able to control where and when you go. It may involve emptying the whole bladder. You may not feel the sensation of a full bladder (until it’s too late) because nerves governing storage lose sensitivity. Compounding the problem is worsening mobility, a common symptom in MS, which can make it challenging to get to the bathroom on time.
- Nocturia—related to urgency and frequency, this involves waking up at night to go.
“Symptoms of overactive bladder become increasingly common with the duration and progression of MS,” says Dr. Andrew M. Shapiro, chief of urology at the University of Maryland Rehabilitation and Orthopaedic Institute.
People with MS can also have problems with emptying. So although the bladder gets full, key signals—to hit the bathroom and to relax the sphincter (so urine can be released)—don’t arrive in a timely way. The bladder continues to fill, like a water balloon, until it’s enlarged and overly relaxed, triggering urgency and incontinence as well as these additional symptoms:
- Hesitancy—a delay in the ability to initiate urination even though the urge is there. The problem here may be jammed signals: In normal bladder function, the sphincter relaxes and opens when the bladder contracts, but in MS, the two can contract at the same time, causing difficulty peeing; a weak and intermittent trickle; or incomplete voiding, where the bladder doesn’t completely empty. In some cases, people can’t void at all.
- Dribbling—similar to incontinence but usually involves involuntary leakage of just a few drops of urine.If the bladder doesn’t empty properly and retains some urine, it can lead to complications such as repeated urinary tract infections (UTIs) or even kidney damage.
First line of treatment
Self-management strategies were shown, in a 2009 study in the International Journal of Clinical Practice, to significantly improve daily bladder and bowel symptoms. “These strategies are important because they give people back a sense of control,” Dr. Kalb says. They include:
- Drinking enough. Some people cut back their fluid intake to minimize urgency and prevent accidents, but dehydration can actually worsen symptoms—the urine can become so concentrated that it irritates the bladder, triggering incontinence. Instead, make sure you’re drinking enough to keep your urine light yellow. It will flush waste, bacteria and mineral deposits to help you avoid infection. Bonus: It will also help keep stool soft to avoid constipation. That said, you might want to space it out, drinking no more than 4 to 6 ounces per hour.
- Drinking strategically. Exceptions to the rule above: Restrict fluids about two hours before an activity where there will be no bathroom breaks and before bedtime, to avoid nighttime wakening.
- Getting regular. Schedule bathroom breaks just ahead of when you usually feel urgency, or every two hours. You’ll train your bladder, avoid overfilling it and reduce the chances of an accident.
- Strength training. Pelvic floor exercises (Kegels) get you contracting and relaxing the muscles that support the urethra, bladder, uterus (for women) and rectum to help you manage incontinence. Yes, men can do Kegels, too. For instructions, see mayoclinic.org’s article on “Kegel exercises for men.”
- Avoiding irritants. Limit caffeinated beverages (coffee, tea and soda), alcohol and artificial sweeteners, which can irritate the bladder and worsen storage problems.
- Eliminating residual urine. If your doctor finds that you’re retaining a certain amount of urine after going to the bathroom, you may be advised to use a catheter three to four times a day to ensure complete emptying.