Bladder dysfunction: often defined as urgency, leaking, frequent urination, and/or incontinence. Although bladder dysfunction affects 78-90% of people with MS, many patients experience feelings of shame, embarrassment, and frustration about their bladder-related symptoms.1 To better understand these challenging symptoms, we reached out to our MS community members to see how bladder dysfunction impacts their daily life, and what they do to control their symptoms.
Common symptoms
“I have major urgency and leaking issues…Constant bladder and kidney infections”
“I suffer from leaking issues and not emptying properly”
“A spastic bladder was my initial MS symptom”
“I really do have limited control over my bladder… prone to urine infections and incomplete bladder emptying”
“Retention. Let me tell you, it’s real, it’s painful and it’s just as much as a problem as incontinence.”
As described by our community members, bladder dysfunction affects many people with MS. In fact, around 78-90% of people with MS experience various forms of bladder dysfunction, which can result in leaking, incontinence, urgency, and frequent urination.1 As explained by many community members, around 25% of MS patients also experience urinary retention, or the inability to empty the bladder.2 Retention can cause difficulty in starting to urinate, and difficulty in sustaining a stream of urine.
As described by many of you, bladder dysfunction and retention can lead to frequent urinary tract infections (UTIs), as well as kidney stones and other kidney problems.3 Many community members shared experiences of rushing to the bathroom (urgency), feeling like they need to go to the bathroom often (frequency), and waking up during the night to use the bathroom. Because MS can block or delay the nerve signals responsible for urination, many MS patients experience bladder dysfunction and/or retention.3
Treatment experiences
“I’ve been on Bethanechol (Urecholine) for years to help the bladder with the muscle tone needed to do its job”
“I now get Botox injections and now have to use a catheter.”
“The urgency drugs never really helped me but Botox injections, a bladder sling, catheters and a very caring urologist… I still have days that my bladder absolutely hates me, but things have gotten better!”
To better manage their bladder symptoms, our community members rely on various prescription medications, medical treatments, and equipment. For some community members, these prescriptions include medications to control leaking, incontinence, and urgency, as well as medications to treat bladder infections or kidney problems. For some community members, your healthcare provider has recommend Botox injections (Botulinum Toxin) (injected into the bladder), which act by paralyzing the bladder muscle.4 Others rely on self-catheterization to empty the bladder (inserting a small tube into the urethra, where urine comes out), or use a surgically-implanted catheter to more-permanently control bladder symptoms. While there a variety of ways to help control bladder dysfunction and retention, ask your healthcare provider which option(s) are best for you.
Natural remedies and daily management
“CBD oil has seemed to help me with this symptom!”
“I have used a product called prelief, which is made of a form of calcium”
“Try corn silk tablets. I have found that it helps my bladder empty and the constant pain I used to feel is gone.”
“I use Depends. I have too.”
“Watching what I eat at certain times helps, avoiding some acidic foods since they can be irritating.”
“Most of the time, I just wear diapers like underwear. It’s not fun but I do what I have to do.”
“I also take 8,400 mg of Cranberry in pills twice a day… That has helped a lot preventing infections”
In addition to prescription medications and/or catheters, some of our community members use natural remedies to manage their bladder dysfunction symptoms. While some use oils, supplements, or vitamins, others find that a specific diet reduces their symptoms. For example, coffee, tea, carbonated drinks, and alcohol tend to irritate the bladder.5 While many people with MS are tempted to drink less water to avoid bladder symptoms, drinking plain water throughout the day (such as 16 ounces at each meal and 8 ounces between meals) can help prevent bladder infections, kidney damage, and constipation.5
Many community members also rely on disposable pads, underwear, or “adult diapers” to be more comfortable throughout the day. Although several community members were hesitant to use these products at first, as described by many of you, being prepared with a pad or disposable underwear allows you to worry less about finding or rushing to the nearest bathroom, enabling you to think less about your bladder throughout the day.
Emotional impacts
“My MS is mostly invisible to most people. It’s attack on my bladder is ugh…awful.
“This is one of those unseen issues that can really affect your life. This has been one of my major problems…. Bathrooms are my best friend…I feel like a toddler at times…”
“The worse is when I’ve had a bad day and finally add enough drugs to get some relief, the wonderful bladder will let go at night. Lovely surprise to wake up drenched.”
“It helps to know I’m not alone!”
As shared by many of our MS community members, bladder dysfunction and retention can have a significant impact on daily life. Due to the shame associated with bathrooms habits, many community members report feeling embarrassed about leaks or bathroom accidents, and frustrated by the effects of this stigmatized symptom. From worrying about leaking to rushing to the restroom, bladder symptoms can make it difficult to enjoy your daily routine, or even to leave the house. While it can be challenging to deal with an invisible illness, many community members mentioned that it helps to know that they’re not the only one experiencing bladder symptoms, and to share ways to better manage these symptoms.
If you’re struggling with bladder dysfunction or retention, consider reaching out to the MS community to learn more about options for management and treatment. As discussed by many community members, bladder symptoms can impact your day-to-day life, so we encourage you to share your experiences, and ask for help, today.
[expand title=”View Works Cited”]
1. Cleveland Clinic. “Bladder and Bowel Dysfunction in Multiple Sclerosis (MS).” Cleveland Clinic, my.clevelandclinic.org/health/diseases/8453-bladder-and-bowel-dysfunction-in-multiple-sclerosis-ms. Accessed 17 May 2018.
2. Stoffel, John T. “Chronic Urinary Retention in Multiple Sclerosis Patients: Physiology, Systematic Review of Urodynamic Data, and Recommendations for Care.” Urologic Clinics of North America, vol. 44, no. 3, Aug. 2017, pp. 429-39, doi:10.1016/j.ucl.2017.04.009.
3. National Multiple Sclerosis Society. “Bladder Symptoms.” National Multiple Sclerosis Society, www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms/Bladder-Dysfunction. Accessed 17 May 2018.
4. Mayo Clinic Staff. “Bladder Control: Medications for Urinary Problems.” Mayo Clinic, 15 July 2017, www.mayoclinic.org/diseases-conditions/urinary-incontinence/in-depth/bladder-control-problems/art-20044220. Accessed 17 May 2018.
5. Clinic Staff. “Bladder Control: Lifestyle Strategies Ease Problems.” Mayo Clinic, 18 July 2017, www.mayoclinic.org/diseases-conditions/urinary-incontinence/in-depth/bladder-control-problem/art-20046597. Accessed 17 May 2018.[/expand]
