Multiple Sclerosis (MS) is a neurologic disease that affects the central nervous system. Symptoms differ for each person affected, but the most common tend to be difficulty with motor function, gait (walking), spastic muscles, and vision problems. Many symptoms of MS are not as easily detected by others but can be just as difficult to live with. Bladder dysfunction can cause incontinence and other urinary problems and occurs in 75-90% of persons with MS.
Bladder dysfunction in MS can be inconsistent and harder to manage. As an experienced nurse who has helped care for people with MS and bladder dysfunction, I can tell you it is helpful to understand why MS causes bladder dysfunction. It gives you the knowledge to adjust management strategies and also be prepared for conversations with caregivers and healthcare providers.
How MS Causes Bladder Dysfunction
MS affects the whole body by breaking down the nerve sheath (a protective covering around nerves), which makes it difficult for the brain to send signals to other parts of the body. Lesions form when there are concentrated areas of nerve damage. The rate at which nerves break down is unpredictable and can lead to intermittent symptoms. For one person, they may have a progressive decline, while others experience episodes of symptoms and then have periods of remission (time with no symptoms). There is currently no cure for MS, and treatment focuses on slowing the damage and managing symptoms.
Bladder dysfunction with MS occurs when lesions form in areas of the brain that are connected to the bladder. It can cause dysfunction of the muscles and sphincters that control how and when urine is released. This dysfunction can cause issues with frequency, urgency, difficulty starting a urination stream, incontinence, and difficulty emptying the bladder. MS bladder dysfunction can be difficult to manage, as symptoms can change based on lesion development or if the person with MS is having active symptoms or is in remission.
Unpredictable bladder control can make it difficult to leave the house or participate in social activities. In one study on bladder dysfunction and MS, they identified that the most challenging parts include unpredictability, loss of feeling of control, anxiety around having an incontinence episode, and embarrassment. This same study found that people with MS who try to self-manage their symptoms, without help from a healthcare provider, report a lower quality of life.
Situations that arise often for people with MS are when the bladder sends signals to the brain anytime it senses urine in the bladder. Instead of waiting or knowing when the bladder is full, it misfires signals due to the damaged pathway. This can cause a frequent feeling of urgency, leading to small urine leaks even when there is not much urine. It can also cause the opposite: the bladder fills with urine, but the nerves controlling the sphincter that releases urine are damaged and do not open and close as they should. This leads to hesitation when trying to initiate the flow of urine and can also cause the bladder to fail to empty completely.
The biggest concern with incomplete bladder emptying is developing urinary tract infections (UTIs), which can turn into sepsis if not caught and treated. UTIs have been documented to occur twice as often in people with MS as in people who do not have the disease. Effective bladder management is key to reducing the risk of UTIs.
Managing MS Urinary Symptoms
There are several approaches to managing MS urinary symptoms. It is important to discuss all symptoms with a healthcare provider to develop a targeted, individualized treatment plan. These are a few of the common treatment options:
- Lifestyle modifications: this can include limiting caffeinated beverages, alcohol, and other fluids considered bladder irritants, such as certain juices, and avoiding other habits such as smoking that have been linked to increased incontinence due to bladder irritation. You can also implement a toileting plan that involves routine, timed trips to the restroom to try to empty the bladder, which helps reduce leaks and sudden urges to urinate.
- Incontinence Products: Using incontinence products helps reduce unexpected episodes of incontinence. Products range from liners placed in underwear for small leaks, pull-up-style products for light to heavy incontinence, and brief- or tabbed-style products for heavy incontinence. Using a variety of products and keeping them available helps prevent issues, regardless of the symptoms being experienced.
- Medications: There are several medications taken orally, applied as a transdermal patch, or injected that target bladder dysfunction. Some target nerve pathways, and others reduce muscle spasms. Medications for bladder dysfunction are used along with other treatments to manage symptoms.
- Catheterization: Some people with MS rely on catheterization to remove urine from their body. This can include an indwelling Foley catheter inserted through the urethra and left in the bladder; it stays in place at all times. The other option is a suprapubic catheter, which is inserted through the abdomen, directly into the bladder. The last option is called intermittent or self-catheterization, in which the individual places a small device through the urethra into the bladder to drain urine, then removes it.
Managing Bladder Dysfunction in the Real World
MS can be a devastating disease, diagnosis and treatments have come a long way, and many people are now living longer and maintaining function. MS is not a one-size-fits-all disease and can even feel invisible for many people living with it. I have cared for patients across the spectrum with MS, those who are profoundly affected and need 24/7 care, and also those who retain the ability to live in their own homes and care for themselves.
It can be helpful to talk through real-world scenarios to better understand how to address MS and bladder dysfunction.
A patient who has always stood out to me had been diagnosed with MS for about five years. They lived alone in their own apartment and had minimal support from family and a paid in-home caregiver. They enjoyed an active social life, swimming in a nearby pool, and used public transportation for grocery shopping and errands. Their bladder dysfunction was causing issues with incomplete emptying. It was being addressed through a neurologist, and this patient performed self-catheterizations throughout the day. However, self-catheterization requires privacy, supplies, and clean hands. It was not often possible to self-catheterize when away from home. The anxiety around unexpected leaks was keeping them from fully participating in activities they wanted to.
Addressing their unpredictable bladder control took a unique approach. We trialed different incontinence products for increased security when away from home, since large, full-bladder leaks were not an issue, discreet protection liners placed within the underwear were the most discreet option. For swimming, they self-catheterized before leaving home and then wore a swimsuit designed for incontinence with built-in leak protection. For men, these are marketed as incontinence swimwear; for women, they may be advertised as period or incontinence swimwear, as they utilize the same technology. These types of swimwear can be a great alternative to a swim diaper as they are very discreet. While the need to self-catheterize could not be avoided, using other products to supplement their care allowed them to participate in more activities while having the security of avoiding unpredictable leaks when going longer between catheterizations. Always follow the provider’s instructions about self-catheterization and how long is advised to go between them.
Another patient I worked with lived in an adult care or foster home. This is a care setting where 4 to 5 individuals live in a home-like setting with around-the-clock caregivers. This patient had been living with MS for quite some time and was mostly bed-bound with limited mobility due to the progression of the disease. Their bladder dysfunction presented with mixed symptoms; sometimes they were unable to empty their bladder, causing repeated UTIs and even urosepsis. Other times, they experienced full bladder loss incontinence that was leaking through absorbent pull-up underwear.
The caregiver reached out because, due to the unpredictability of urine output, they had to change the bed linens and clothing often each day. This was causing stress and strain for the caregivers and the patient, as they had to use a mechanical lift to change the bed linens. After measuring for sizing, we ordered a brief-style product that is easier to use with bed-bound patients; it allows the caregiver to roll them side to side to place and remove the product.
Brief-style products often offer the highest level of absorbency, making it important to evaluate incontinence product absorbency levels when managing severe bladder loss. Manufacturers, such as LivDry, even lab test their products to give you an estimate of how much fluid they can hold. Their brief-style product, EnduraDry Max Adult Diapers with Tabs, can hold up to 17 cups of fluid. The large capacity of these products can be especially helpful for MS bladder dysfunction, as they accommodate a high volume of urine. For an extra layer of protection and to minimize full bed linen changes, we also used absorbent underpads for bed in case there was additional leakage beyond the brief, especially at night when more frequent brief changes do not occur.
Final Thoughts
With many cases of MS, the disease can be unpredictable. Developing a plan with multiple levels of interventions can help avoid unexpected leaks due to incontinence. Bladder dysfunction can be frustrating and uncomfortable to deal with, but with multi-layered protection and a little planning, it doesn’t have to keep people with MS from enjoying their lives.
