Multiple Sclerosis (MS) is a condition that is not easy to pin down in one simple description; it is uniquely experienced by each person who is diagnosed with this disease. With around 1 million people living with MS in the United States (the majority of them women,) MS is not rare so much as it is difficult to spot at times. Many of the experiences of MS warriors are characterized as “invisible symptoms” that are not as overt but may be just as debilitating. Among these is urinary incontinence, an extremely common symptom affecting about 80% of women with MS. Why such a high number? There are a few things at play that are either directly or indirectly related to the underlying condition, which primarily affects the nerve tissue and signals. Let’s break down some of the factors that tie MS and urinary incontinence, with help from Attn: Grace Medical Advisor Dr. Jeannine Miranne.
One of the direct causes is when MS-induced nerve damage in the brain and spinal cord impacts nerves that control the bladder. When the nerves aren’t signaling correctly, it can cause issues with how your bladder stores urine or can cause your bladder to become overactive, increasing the urge to urinate. This produces urge incontinence, where you feel that you need to go – NOW. There might be frequent feelings of urgency followed by leaks when you can’t get there in time.
Incontinence could also arise from the impact that MS has on the spinal cord which could cause muscle discoordination. Says Dr. Miranne, “Women with MS often develop discoordinated contraction between the detrusor muscle of the bladder and the urethral sphincter muscles. In other words, the muscles can contract simultaneously, leading to difficulty with bladder emptying and potentially overflow incontinence.” It can be treated by learning how to catheterize yourself or being placed with a suprapubic catheter. In a conversation with renowned MS advocate Ardra Shepherd, she talks about the unexpected empowerment of intermittent catheterization. Read that full blog here.
Stress incontinence is also common for those with MS. This is the leakage of urine when your bladder experiences pressure such as when you cough, sneeze, run, or lift something heavy. MS can cause weakness in the pelvic floor due to nerve damage, making the leaks happen more often or with less ‘stress’. Remember, stress incontinence is not caused by psychological stress but rather physical stressors in the abdomen, so with MS that could mean leaks when doing activities like wheelchair transfers or when doing physical therapy exercises. If you want to learn more about pelvic floor therapy, this blog is a great place to start.
Another contributing variable if you have MS can be the side effects of certain medications that can impact incontinence, either directly or indirectly. For example, some medications can slow down your bowels. Sluggish bowels can lead to more pee leaks due to increased pressure on the bladder.
One area of exciting progress is that we are starting to see many more open conversations about what it’s like to live with MS, from everyday people sharing on social to celebrities opening up about their experiences in podcasts and other mediums. One of our newest favorites is The MesSy Podcast, hosted by Christina Applegate and Jamie-Lynn Sigler.
If incontinence is part of your life with MS, speaking to your general practitioner or MS specialist is a great place to start. It can be helpful to keep a journal and write down your urinary incontinence symptoms as they happen and see if they correlate to other symptoms or stressors. It is especially important to see a doctor if you are experiencing frequent urinary tract infections (UTIs) or Hematuria (blood in the urine). If the first healthcare provider you see doesn’t have answers, we encourage you to persevere, as Ardra does in her story. Remember that statistic? Over 80% of women who have MS experience some type of incontinence, and there are providers out there who can help.
As for limiting the impact that leaks have on your life, there are many options to try. Dr. Miranne notes timed and double-voiding are often effective for women with MS. This means making timed trips to the bathroom (rather than waiting for the urge) to avoid leaks, and staying on the toilet for a longer period of time or even leaning forward while on the toilet to ensure that the bladder is empty before you continue on with your day.
Other tips include avoiding drinks or foods that irritate your bladder, trying pelvic floor exercises, wearing comfortable incontinence underwear or pads, and talking to your doctor about medications or procedures that can help—or identifying medications that could be contributing to the problem. Botox is a relatively new procedure for MS-induced urinary incontinence that some women try if other medications or procedures fail.
With more than a million people living with MS in the U.S. today, there’s enormous urgency (no pun intended) for quality resources and support. It’s also long past time that bladder leaks, in this or any other context, be destigmatized and not the cause of so much shame and embarrassment. For more content on multiple sclerosis, here are a few of our favorites:
Ardra Shepherd’s Blog Tripping on Air
Selma Blair featured on Celebrity Memoir Book Club
The encyclopedic video library from the Multiple Sclerosis Association of America
Disclaimer: This content is for informational purposes only, even if and regardless of whether it features the advice of physicians and medical practitioners. This content is not, nor is it intended to be, a substitute for professional medical advice, diagnosis, or treatment and should never be relied upon for specific medical advice.