Living with multiple sclerosis (MS) and incontinence can be challenging, but it is also manageable with the right support, planning and practical strategies. Bladder and bowel issues are common in MS, and with guidance from health professionals such as MS nurses, continence nurses, urologists and pelvic health physiotherapists, many people find ways to stay active, social and confident. We asked MS Australia’s Lived Experience Expert Panel (LEEP) about the ups and downs, and their top tips for managing this invisible symptom of MS.
1. Don’t put up with incontinence in silence
One of the strongest messages from the LEEP is that incontinence can feel embarrassing, but it is not something you just have to “put up with”. Talking to a neurologist, GP, MS nurse or continence nurse can open the door to practical support, assessment and treatment. This aligns with guidance from MS Australia that bladder and bowel issues are common in MS and should be properly assessed, because symptoms can have different causes and may improve with the right plan.
Early intervention is also important in terms of treatment options. Unfortunately, I delayed seeing a Urologist for such a long time that my only option was self-catheterisation. Yes, these issues are embarrassing but put your health first! – Tessa, MS Australia LEEP Member
2. Build a routine that works for your body
A regular routine can make a big difference. For some people with MS, that means going to the toilet on a schedule, allowing enough time, and learning the patterns of their own body. Others may use strategies such as pelvic floor exercises, bladder training, diet changes or intermittent self-catheterisation if recommended by their specialist team. Many of the LEEP shared that having a routine was key: planning catheter use before leaving home, noticing how long could comfortably pass between toilet breaks, and learning to respond early rather than waiting until urgency became overwhelming.
3. Planning ahead can reduce stress
Planning ahead is one of the most practical tips for living well with MS and incontinence. That might mean using the toilet or catheter before leaving the house, carrying spare pads or continence underwear, packing a change of clothes, or allowing extra time when travelling. It can also help to check toilet access before an appointment or event.
The National Public Toilet Map is a useful Australian resource that shows the location of more than 23,000 public and private public facilities across the country, including toilets, adult change and baby care. It also provides information about accessibility, opening hours and features such as sharps disposal and showers. For people living with incontinence, the Toilet Map can support greater independence and confidence when travelling, going to appointments or visiting new places.
I recently found out about the app that tells you where all the public toilets are in Australia, I fully intend to use this to find any facilities that are near any venue that I am attending. – Anne, MS Australia LEEP Member
Another helpful Australian resource is the Master Locksmiths Access Key (MLAK) system, which allows people with disability to access dedicated public facilities fitted with a special lock, including some locked accessible toilets, Changing Places facilities, elevators at railway stations, and facilities in National Parks and council areas. People with disability can purchase a MLAK key, which can make it easier to access important facilities when travelling or visiting unfamiliar places.
4. The right treatment can be a game changer
There is no single solution for everyone, but treatment options do exist. Depending on the type of bladder or bowel problem, people may be offered pelvic health physiotherapy, medication, dietary advice, continence products, self-catheterisation, or procedures such as bladder Botox. It is really important to find the right mix of supports. For Anne, self-catheterisation brought relief from years of urgency and repeated urinary tract infections; for Tessa, it meant being able to sleep through the night without getting up four to six times to urinate. For Jo, bladder Botox significantly improved symptoms and restored some control.
I know that Botox won’t be the answer forever, but for now the months that it is making a difference, and controlling my incontinence somewhat, it means I’m taking control of one part of an incurable and unpredictable chronic disease that really doesn’t allow much control. – Jo, MS Australia LEEP Member
MS resources consistently emphasise that treatment should be tailored to the individual, because urgency, retention and bowel issues can each require different approaches.
5. A support team can make all the difference
Living with MS and incontinence is easier when you do not have to manage it alone. The LEEP emphasised the value of a multidisciplinary team, including nurses, urologists, pelvic physiotherapists, dietitians, occupational therapists and home support workers. Family and friends also play an important role, whether that means practical help, emotional support or simply being safe people to be honest with. Asking for help can be difficult, but it can also be the step that makes everyday life more manageable.
6. Protect your dignity by being prepared, not by being perfect
Accidents can still happen, even with good planning. A helpful mindset is to focus on preparation rather than perfection. Spare products, easy-to-change clothing, and a simple backup plan can help reduce anxiety. It may also help to choose clothes that feel comfortable and practical when you are out and about. Feeling prepared does not take away the frustration of symptoms, but it can make them less disruptive and less frightening.
I toilet break lots, don’t drink heaps when out and always have toilet paper in my car and tissues in my bag. – Jody, MS Australia LEEP Member
7. Look after bowel health as well as bladder health
Bladder symptoms often get the most attention, but bowel issues such as constipation can be just as disruptive in MS. Continence resources recommend talking to a health professional about fibre, fluid intake, bowel routines and other treatments if constipation or bowel accidents are becoming a problem. It is important not to drastically reduce fluids in an attempt to avoid bladder leaks, because dehydration can not only irritate the bladder and increase the risk of urinary tract infections (UTIs), but also increase the risk of constipation. Instead, a clinician can help work out a balanced plan that supports both bladder and bowel health.
My tip to other females would be to please get all tests around continence and women’s health done and don’t panic that it’s your MS. I would never have known my uterus was having issues and still would have thought it was MS related. – Jody, MS Australia LEEP Member
8. Humour and honesty can help
Incontinence can be confronting, but humour and honesty can sometimes make it easier to cope. Being able to laugh at awkward moments, speak openly with trusted people, or share experiences to help others can reduce shame and isolation. That does not mean every moment feels light or easy. It simply means that dignity and humour can coexist, even in difficult situations.
9. Remember that support is available
Bladder and bowel issues are common in MS, and there are professionals, services and products designed to help. With the right information and support, continence issues can often be managed effectively. MS organisations and continence services also point to practical strategies including pelvic floor exercises, continence products, bladder retraining, careful fluid timing, bowel routines, and specialist assessment for problems such as retention, urgency or recurrent UTIs. If symptoms are affecting your daily life, sleep, work, travel or confidence, reaching out for support is a practical and important next step.
A final word
Living with MS and incontinence often involves trial and error, courage and constant adjustment. But as the lived experience stories shared show, people do find ways to adapt, stay engaged and keep doing the things that matter to them. The most important tips may be these: ask for help early, learn what works for your body, plan ahead where you can, and be kind to yourself when things do not go to plan.
World Continence Week (15 to 21 June) is an annual event that aims to raise awareness of incontinence related issues.
