Living with multiple sclerosis (MS) and incontinence can be a challenging journey, but it's not an insurmountable one. It's easy to feel overwhelmed by the sheer volume of information and advice out there, but I'm here to offer a fresh perspective and some personal insights. In my opinion, the key to managing this invisible symptom of MS lies in a combination of early intervention, tailored support, and a healthy dose of self-care. Let's dive into some of the most impactful strategies that can make a real difference in your daily life.
The Power of Early Intervention
One of the strongest messages from MS Australia's Lived Experience Expert Panel (LEEP) is that incontinence is not something you have to 'put up with'. Personally, I think this is a crucial point to emphasize. Incontinence can feel embarrassing, but it's essential to remember that talking to a neurologist, GP, MS nurse, or continence nurse can open doors to practical support, assessment, and treatment. What many people don't realize is that bladder and bowel issues are common in MS, and they can have different causes. This is why it's so important to seek professional help early on. In my experience, I delayed seeing a urologist for too long, and my only option was self-catheterization. While this is a viable solution, it's crucial to prioritize your health and seek professional guidance as soon as possible.
Building a Routine That Works for You
A regular routine can make a significant difference in managing incontinence. For some people with MS, this might mean going to the toilet on a schedule, allowing enough time, and learning the patterns of their own body. Others may find strategies like pelvic floor exercises, bladder training, diet changes, or intermittent self-catheterization helpful. What makes this particularly fascinating is that many of the LEEP members shared that having a routine was key. Planning catheter use before leaving home, noticing how long they could comfortably pass between toilet breaks, and learning to respond early rather than waiting until urgency became overwhelming were all part of their strategies. In my opinion, finding a routine that works for you is a game-changer, as it can significantly reduce stress and anxiety.
Planning Ahead for a Stress-Free Life
Planning ahead is one of the most practical tips for living well with MS and incontinence. This might involve 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 traveling. What makes this especially interesting is that it can also help to check toilet access before an appointment or event. The National Public Toilet Map is a fantastic Australian resource that shows the location of over 23,000 public and private facilities across the country, including toilets, adult change, and baby care. It also provides information about accessibility, opening hours, and features like sharps disposal and showers. For people living with incontinence, this map can be a lifeline, supporting greater independence and confidence when traveling, going to appointments, or visiting new places.
The Right Treatment Can Be a Game Changer
There is no one-size-fits-all solution for incontinence, 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-catheterization, or procedures like bladder Botox. What makes this particularly intriguing is that finding the right mix of supports can be transformative. For Anne, self-catheterization 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. In my opinion, finding the right treatment is a crucial step in taking back control of your life.
The Power of a Support Team
Living with MS and incontinence is easier when you don't have to manage it alone. The LEEP emphasized the value of a multidisciplinary team, including nurses, urologists, pelvic physiotherapists, dietitians, occupational therapists, and home support workers. Family and friends also play a vital role, whether it's practical help, emotional support, or simply being someone to be honest with. Asking for help can be difficult, but it can also be the step that makes everyday life more manageable. In my experience, having a support team has been instrumental in helping me navigate the challenges of living with MS and incontinence.
Protecting Your Dignity
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're out and about. Feeling prepared doesn't take away the frustration of symptoms, but it can make them less disruptive and less frightening. In my opinion, protecting your dignity is about being prepared, not being perfect.
Looking After Bowel Health
Bladder symptoms often get the most attention, but bowel issues like constipation can be just as disruptive in MS. Continence resources recommend talking to a health professional about fiber, fluid intake, bowel routines, and other treatments if constipation or bowel accidents are becoming a problem. It's important not to drastically reduce fluids in an attempt to avoid bladder leaks, as 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. In my experience, looking after bowel health is just as important as bladder health.
The Power of Humor and Honesty
Incontinence can be confronting, but humor 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 doesn't mean every moment feels light or easy. It simply means that dignity and humor can coexist, even in difficult situations. In my opinion, finding ways to laugh and be honest can be a powerful coping mechanism.
Remembering 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 organizations and continence services also point to practical strategies like pelvic floor exercises, continence products, bladder retraining, careful fluid timing, bowel routines, and specialist assessment for problems like 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. In my experience, support is available, and it can make a real difference.
A Final Word
Living with MS and incontinence often involves trial and error, courage, and constant adjustment. But as the lived experience stories shared by the LEEP show, people do find ways to adapt, stay engaged, and keep doing the things that matter to them. The most important tips, in my opinion, are to ask for help early, learn what works for your body, plan ahead where you can, and be kind to yourself when things don't go to plan. World Continence Week (15 to 21 June) is an annual event that aims to raise awareness of incontinence-related issues. It's a reminder that we're not alone in this journey, and that support is available. So, let's embrace the challenges, celebrate the victories, and keep moving forward with resilience and determination.
