Bladder problems affect up to 80% of people with MS, but the good news is that there are strategies and support that can make a real difference. Knowing that this is a common symptom, can give you confidence to speak to your nurse or doctor, and try approaches and/or medications that can help you manage urgency, frequency, nocturia (urinating frequently at night) and incontinence.
Don’t forget to scroll down to find out how you can order your MLAK: a master key that gives you 24/7 access to over 350 disabled toilets across Australia.
Introduction
If you’re dealing with bladder problems since your MS diagnosis, you’re not alone. Research shows that bladder problems due to MS occurs in up to 80% of pwMS at some time during their disease course. The constant worry about finding a toilet, the urgency that seems to come from nowhere, or leaking when you’re not ready, these aren’t just inconveniences. They can affect your confidence, your social life, and your willingness to leave home.
Bladder symptoms often go undiagnosed and undertreated. Many people with MS attempt to self- manage their bladder issues instead of receiving medical care, which can affect wellbeing and overall health.
The important thing to remember is: bladder problems in MS respond well to treatment when properly assessed and managed. There is no shame in experiencing bladder issues.
Here’s what helps with bladder control in MS.
Key Takeaways
- Up to 80% of people with MS experience bladder problems, but these respond well to proper treatment
- Understanding whether you have storage problems, emptying problems, or both determines the right approach
- Simple strategies like timed toileting and pelvic floor exercises can make a measurable difference
- Assessment prevents complications like infections and kidney damage
- Multiple treatment options exist, from practical techniques, to medications
Understanding What’s Happening
MS damages the nerve pathways between your brain and bladder. Lesions can cause disruptions to the coordination needed to fill, store, and empty properly. The most common pattern is an overactive bladder: this feels like urgency, needing to go frequently, and sometimes leaking. Other people may have difficulty emptying the bladder completely, or a weak stream.
This is called neurogenic bladder: bladder dysfunction characterised by involuntary contractions of the detrusor muscle (muscle within the bladder wall) during filling, caused by neurological damage.
About 60% of people with MS experience urgency and urge incontinence, whilst 25% have difficulty emptying their bladder.
Practical Strategies That Work
Keep a Bladder Diary
Before trying treatments, track your patterns for three days. Note down the times when you drink fluids, when you urinate (including any times you get up during the night), any leaking episodes, and the urgency you feel. The management of bladder dysfunction focuses primarily on improving symptoms and quality of life through systematic assessment. Having a diary will help you and your healthcare team understand your specific pattern.
Timed Toileting
Instead of waiting until you feel desperate, use the clock. For people with only mild disability and overactive bladder symptoms, using lifestyle strategies, such as scheduled voiding is a first step in managing bladder issues.
How to do it:
- Start by going to the toilet every two hours during the day, whether you feel the need or not
- Gradually extend the time between visits if you’re staying dry
- Set reminders on your phone if needed
- Empty your bladder completely each time, taking your time
Manage Your Fluid Intake Strategically
This doesn’t mean drinking less as that can lead to dehydration, or concentrated urine that irritates your bladder and increases infection risk. Fluid management is another first-line treatment.
How to do it:
- Aim for 6-8 glasses of water daily, spread throughout the day
- Drink more in the morning and early afternoon, less after 6pm
- Limit bladder irritants: caffeine, alcohol, carbonated drinks, and acidic juices
- If you’re going out, don’t dehydrate yourself beforehand, this makes urgency worse
Pelvic Floor Muscle Training
Studies have shown effectiveness of pelvic floor muscle training for neurogenic detrusor overactivity, though it’s helpful only among people with intact neural pathways to the pelvic floor. If you can feel and contract these muscles, training can help.
How to do it:
- Squeeze the muscles you’d use to stop urine flow mid-stream
- Hold for 3-5 seconds, then relax for 3-5 seconds
- Repeat 10 times, three times daily
- Don’t hold your breath or tighten your stomach, thighs, or buttocks
- Consider seeing a physiotherapist who specializes in pelvic floor training for proper technique
When you feel the urgency!
For sudden, overwhelming urgency:
- Stop and stand still, rushing increases the chance of leaking
- Squeeze your pelvic floor muscles repeatedly
- Take slow, deep breaths
- Distract yourself: count backwards from 100, or focus on an object in the room
- Once the urgency subsides, walk calmly to the bathroom
Medical Treatments
Medications
Having a good understanding of what your bladder issues are, are important before starting medication. Identifying whether you have storage issues, or voiding issues, by keeping a bladder diary, can then help your doctors prescribe the right medication.
Medications can reduce urgency, frequency and incontinence. They are often started as a small dose that can be increased.
Speak to your doctor about the next steps for an assessment.
Advanced Options
If standard treatments don’t help enough:
Botulinum toxin (Botox) injections: Botox injections can be helpful when medications are ineffective. Injections into the bladder wall relaxes an overactive bladder for several months.
Nerve stimulation: Peripheral tibial nerve stimulation shows effectiveness for overactive bladder activity in people with MS. A small needle electrode near your ankle sends impulses to calm bladder nerves.
Intermittent catheterisation: For incomplete bladder emptying, and urinary retention, people with MS can intermittently self-catheterise. This involves inserting a thin tube through the urethra, to empty the bladder into the toilet. While it sounds daunting, many people find this gives them freedom and control.
When to See Someone
When experiencing bladder issues, it can often feel like it’s best to wait until symptoms become unbearable, before speaking. However, knowing that bladder symptoms are common in people with MS should give you confidence to speak to someone when you feel you have concerns. Treating your bladder problems can improve your quality of life, so please don’t suffer in silence!
If you feel that:
- the amount of times you urinate every day disrupts your daily life
- you get up more than once overnight to urinate
- you experience the urge to rush to the toilet
- you have difficulty starting to urinate
- you experience a weak stream
- you have frequent urinary tract infections
It may be time to speak to a doctor or nurse.
Continence Nurses
If you would like to see a continence nurse who can provide assessment and management, please see the following links:
- MS Plus: https://www.msplus.org.au/support-services/allied-health-services/continence-support
- Coloplast Nurse Advisers, available to be seen virtually: https://www.coloplast.com.au/care-services/continence-nurses/ or call 1800 316 649
- https://www.continence.org.au/get-help/continence-service-providers
MLAK Keys: People with a disability are able to purchase an MLAK key that will open all doors, toilets, playground equipment and other facilities fitted with a lock that uses the special MLAK cylinder.
Follow this link to order your key for $64: https://masterlocksmiths.com.au/mlak/
References
- Aharony SM, Lam O, Corcos J. (2017). “Treatment of lower urinary tract symptoms in multiple sclerosis patients: Review of the literature and current guidelines.” Canadian Urological Association Journal, 11(1-2):E49-E64. https://pmc.ncbi.nlm.nih.gov/articles/PMC5403674/
- Tornic J, Panicker JN, Aljumaily L, et al. (2023). “Management of bladder dysfunction in multiple sclerosis: a systematic review and meta-analysis of studies regarding bladder rehabilitation.” European Journal of Physical and Rehabilitation Medicine, 59(1):1-12. https://pmc.ncbi.nlm.nih.gov/articles/PMC9980558/
- Phé V, Chartier-Kastler E, Panicker JN. (2018). “Management of neurogenic bladder in patients with multiple sclerosis.” Nature Reviews Urology, 13(5):275-288. https://www.nature.com/articles/nrurol.2016.53
- Manack A, Motsko SP, Haag-Molkenteller C, et al. (2011). “Epidemiology and healthcare utilization of neurogenic bladder patients in a US claims database.” Neurourology and Urodynamics, 30(3):395-401.
- Tubaro A, Puccini F, De Nunzio C, Digesu GA, Elneil S, Gobbi C, Khullar V. (2018). “The Management of Lower Urinary Tract Dysfunction in Multiple Sclerosis.” Current Bladder Dysfunction Reports, 13:305-313. https://pmc.ncbi.nlm.nih.gov/articles/PMC6022518/
- Larsen MBH, Wiegell SR, Christensen JR, Sunde NM, Sørensen LB, Magyari M, Panicker JN. (2024). “The impact of bladder problems on well-being in multiple sclerosis – A cross-sectional study.” Multiple Sclerosis and Related Disorders, 86:105661. https://www.msard-journal.com/article/S2211-0348(24)00238-4/fulltext
- McClurg D, Goodman K, Hagen S, Harris F, Treweek S, Norton C, Booth J, Hislop J, Logan J. (2022). “Expert opinion consensus document: management of bladder dysfunction in people with multiple sclerosis.” British Journal of Nursing, 31(Sup3):S1-S20. https://www.magonlinelibrary.com/doi/abs/10.12968/bjon.2022.31.Sup3.S1
- De Sèze M, Ruffion A, Denys P, Joseph PA, Perrouin-Verbe B, GENULF. (2007). “The neurogenic bladder in multiple sclerosis: review of the literature and proposal of management guidelines.” Multiple Sclerosis Journal, 13(7):915-928.
