Bladder and bowel symptoms are some of the most common, and often least talked about, symptoms of multiple sclerosis. To help our community better understand why these symptoms occur, how common they are, and what support is available, we spoke with KJ Lazarus a neurology Clinical Nurse Specialist with a special interest in continence care.
What is your role, and what drew you to working in MS and continence care?
I am an immunotherapy and Continence support nurse who is very fortunate to work with a great team of HCPs at the Austin Hospital in Melbourne, Australia, in NCRESS (Neuroimmunology Clinical Research and Education Support Service)
I have worked as a MS Nurse, across 2 different services, either as a research coordinator, or in a clinical role for 20 years this year. My passion in continence care in MS, to be honest I fell in to it. I was very fortunate to work with Continence Nurse Louise Kurczycki at Eastern Health a few years back now, also in Melbourne. Louise invited me to work with her on a Prevalence study, looking at the incidence of Continence Dysfunction in MS in the Australian population. (The aim was Australian – NZ but we had issues with Ethics in NZ at the time).. She became a pivotal mentor to me, showing me the immense impact good continence care can have for people living with MS and the flow on impact on their quality-of-life measures and other MS symptoms, and the effective and potentially life changing management strategies that are available. So, I got hooked on this ‘side hustle’ in my now clinical role as a MS nurse.
How common are bladder and bowel symptoms for people living with MS, and why do you think they’re often under‑reported?
Oh so common.
There is differing information out there, however the data reflects above 65% of people have some level of MS related bowel dysfunction and around 90% of people with MS have some level of MS related bladder dysfunction.
In my clinical experience, in the different areas both neurology and in critical care, commonly people are very reluctant and often feel embarrassed to talk about bladder and bowel patterns and habits.
The reasons for this reluctance can be many, from stigma, embarrassment or just thinking it is part of having had children, aging, or not having an understanding that it is very commonly a symptom of a MS diagnosis.
At a basic level, why does MS affect bladder and bowel function?
MS causes damage to the nerves of the central nervous system (brain and spine), with demyelination of the nerves. This damage can impact the transmission of the nerve impulses/messages up and down the spinal cord to and from the brain, causing blocked or slow communication of these nerve messages.
Both bladder and bowel function is complex, but a large part is reliant on the communication of nerve messages up and down the spine, to and from the brain via nerve pathways.
If there are any MS lesions (areas of demyelination) along the nerve pathways needed for the communication for healthy bladder and bowel function, it can cause changes, disruptions to the usual workings of the bladder and bowel. This is what basically, leads to problems of bladder and bowel function in MS.
What are some of the most common bladder symptoms people with MS experience?
There are three main types of bladder dysfunction caused by MS.
The main symptoms of bladder dysfunction in MS are problems with storage, a combination of storage and emptying, or emptying.
The common symptoms people experience are;
- Storage issues – Neurogenic Overactive Bladder (NOAB)
Frequency Urgency Nocturia +/- leakage, or accidents. - Combined storage and emptying issues – Detrusor (bladder Muscle) Sphincter (valves) Dyssynergia (uncoordinated)/ (DSD)
Intermittent flow Hesitant flow Need to double void
Sensation of incomplete emptying – partial retention
Emptying issues – Under Active Bladder
- Bladder holds on to more urine that is should and not much emptying happens.
No desire to void – so tend not to pee very often Leak without warning
Waking up wet Incomplete emptying (larger volumes of retention… or complete)
What bowel symptoms are most commonly seen in MS?
The most common symptom of bowel dysfunction in MS is constipation.
This is caused by the slowing of the movement of stool through the large intestine/colon.
It is also quite common, especially in people who may not link MS and bowel dysfunction together, and/or have not spoken to their MS health care professional about long standing constipation, to have such significant constipation it leads to bowel overflow. This is when patients report “one day I am very constipated, then next day I have diarrhoea, then constipated again”.
On further assessment, this ‘diarrhoea’ is often a yellowish mucous like fluid, which is actually a lubricating like liquid the rectum creates to help move the blockage it senses. This reflects very significant constipation that needs intervention.
When should someone with MS consider raising bladder or bowel concerns with their healthcare team?
Anytime. If you have questions about it, if you have symptom of bother that are new, or old, big or small, or changed for the better, or worse, you’re male, female, or if you just want a better understanding of bladder and bowel wellness in MS, that is the right time.
As with most/all aspects of MS, things change, sometimes for the better, sometime for the worse, and somethings things stay stable.
Any and all times is best to talk to your healthcare team about your bladder or bowel concerns, as it is good too to track how things are going over time.
Continence function is a component of the Disability Scale used in MS, the EDSS. So it should be discussed on some level at every appointment. It may be up to the patient to be a strong self-advocate to answer openly and honestly if the ‘right’ questions are not asked.
No matter how small or big you feel your bladder and bowel symptoms to be, we encourage everyone to talk to their healthcare team about them.
What kinds of assessments or supports might be available once these concerns are raised?
This will be very dependent on the symptoms reported and the level of bother to the patient/client.
There are some simple self-screening tools that re available, such as the Coloplast MS Checklist tool, available on MSNZ website. This can be done independently, or by any healthcare provider. This can be a good conversation starter.
Once an issue has been disclosed, as a baseline a full baseline assessment may be done, either by the primary healthcare team, or a specialist the patient may be referred to. This takes in to account full medical history and all symptoms, to find the cause of the symptoms.
This will also assist in share decision making, if further referrals, assessment and follow ups are required.
Further assessments at this point may be a renal bladder ultrasound, patient completed bladder and or bowel diaries or referrals to continence, urology or gastroenterology specialists.
There are also patient guides available, such as “Your Guide to Bladder and Bowel Wellness in MS” which was recently put together by a group of NZ and Australian MS Nurses, with the support of Hollister. This too is available via MSNZ website.
Other places for information are MSNZ, Continence NZ Continence Health Australia.
What advice would you give to people with MS who feel embarrassed or unsure about advocating for help with these symptoms?
You are not alone, it is very common.
The first step may feel awkward, but then it should get easier. With knowledge there is power, so it can be empowering to take control of all aspects of her health and be a good self-advocate. It can improve your quality of life and enable you live well with MS.
Bladder and bowel symptoms in MS that can be very effectively managed and in turn lead to better quality of life outcomes.
As I mentioned earlier, Continence function is a component of the Disability Scale used in MS, the EDSS. This reflect just how common these symptoms are in MS.
We can’t help, if we don’t know.
Please talk to us about it!
How can good bladder and bowel management improve quality of life for people living with MS?
Speaking up and taking care of your bladder and bowel wellness can lead to not just direct changes to your quality of life, but also flow on affects, including improvement in other common MS symptoms.
Better sleep, if not having to get up many times overnight to go to the toilet. This can lead to improved fatigue, improved cognition, and improved mood.
You may also have improved mood from direct improvement in bladder and bowel health, with more control, less need to withdraw from others, and improved self-confidence.
It can improve your connection to others, as you will be less likely to be so fearful to leave home, having better plans to manage your continence needs away from home. This is also true for general increased productivity, when not having to constantly worry about where a bathroom is, or having the need to frequently go the bathroom, or spend long periods of time in the bathroom.
Also, having a good bladder management plan can decrease the risk of having urinary tract infection, which can lead to hospitalisations, or pseudo-MS relapse activity. It can also prevent permanent structural changes to the urinary or digestive tracts if management is implemented early.
It can feel very empowering to find a management plan that works, and enable you to control your bladder and bowel, rather than the other way around.
Even knowing about resources such as the Toilets NZ website and the NZ toilet card can simple, yet very helpful tools to make life a little easier for continence health.
What is one key message you’d like people with MS to know about bladder and bowel symptoms?
Bladder and bowel symptoms in MS are very common; you are not alone and there are very effective and doable management strategies out there to help you get control over your blader and bowel back! Just talk to your healthcare team about your bladder and bowel (please).
And finally, outside of work, what’s one small thing that helps you switch off or recharge?
Love a good nap but also love to travel, but currently spending more time enjoying my time as my teenage kids Uber driver to sports and dance activities. (Yes, I am one of those yelly mums on the sidelines, much to my kids embarrassment… and I love that too!)
Last Updated July 27, 2026