Multiple sclerosis, incontinence and resilience

Justine was diagnosed with multiple sclerosis (MS) more than a decade ago and has experienced a range of continence health issues that she now manages with regular pelvic floor exercises, continence underwear and resilience. This is her story.

From a very young age, Justine was aware of the effects multiple sclerosis can have on bladder and bowel control. Her mother was diagnosed with the chronic autoimmune disease when Justine was a young child and by the time she had reached her late teens, she was helping to manage her mother’s incontinence (loss of bladder and bowel control).

"Mum was incontinent, but she was in denial," Justine says. "In the late 1980s there was very little information available and people didn't really talk about it. She began soiling the bed nightly, pulling out her catheter each day, and frequently wetting the floor.

"By that stage, she was put into long-term care because I couldn't physically or mentally look after her anymore, which was absolutely heartbreaking," she says.

Her mother later passed away from complications related to MS, and not long after, Justine began experiencing symptoms that eventually led to her own MS diagnosis.

Gradual development

Justine first noticed her eyesight deteriorating and began experiencing mobility issues, but it would be another eight years before she received a diagnosis.

"I had three MRIs and a lumbar puncture and saw a neurosurgeon, a neurologist and an ophthalmologist. It took them over 6 months to diagnose me," she says.

Having witnessed firsthand how MS had affected her mother’s life, Justine says the diagnosis was a major shock.

"I didn’t have any bladder or bowel control issues to start with, but that changed after only a few months. I’d go to the toilet and think that I'd finished, stand up and then wet myself. I didn't realise my bladder wasn’t empty," she says.

What is post-micturition incontinence?

Sometimes referred to as after-dribble, post-micturition incontinence is involuntarily leaking wee when standing up after going to the toilet, pulling your clothes up, or walking away from the toilet. See other definitions in our bladder jargon buster bit.ly/bladderjargon.

As her condition progressed, Justine began to experience a range of continence-related challenges - some expected, some not. She says many symptoms developed so gradually she did not initially recognise them as being connected to MS. One of the most significant issues has emerged only in the past year: a recurrent urinary tract infection (UTI) caused by antibiotic-resistant bacteria. Seeking help recently, she consulted a urologist, but the appointment left her distressed.

"As soon as I said I had MS, UTIs and bladder problems, she told me I would have to self-catheterise. I didn’t feel I was at that stage at all," she says. "She didn’t even examine me and I really felt like my concerns were dismissed."

Justine has also experienced changes associated with menopause, including a urethra (wee tube) that no longer fully closes, allowing bacteria to enter more easily. Additional medical complications, including three primary cancers and mast cell activation syndrome (MCAS), which affects her dietary tolerance and contributes to fluctuations in her bowel symptoms, have further complicated her continence health.

Finding a treatment that works

A turning point came when she was referred to a pelvic floor physiotherapist.

"She was an absolute game-changer," Justine says.

The physiotherapist spent an hour with her, performed a thorough examination, and provided practical guidance on bladder and bowel management — including correct toileting techniques, pelvic floor exercises, and lifestyle adjustments.

"I felt validated. Someone was finally listening to such a personal issue and not making me feel like it was all in my head," she says.
Justine now manages her continence with regular pelvic floor exercises, specialised lubricants, and behavioural strategies such as scheduled toileting to prevent over-filling. She also uses continence underwear when her pain medication is increased, as the medication can relax the muscles that control the bladder.

"If I’m going through a period of severe pain, I know I need to wear continence underwear because I could be out in the shops and suddenly lose control. It’s not even about having a full bladder - there might only be 100 or 200ml there (an adult bladder can hold approximately 400-600ml), but my bladder muscles can just contract unexpectedly."

Despite antibiotic resistance limiting treatment options, she drinks water frequently and supports her bladder health with prescription drug, Hiprex (methenamine hippurate), to prevent or suppress urinary tract infections. "Sex also has been a nightmare at times due to getting UTIs, so I make sure I wee straight away when we finish," Justine tells Bridge.

Advocating for yourself

In addition to advocating for others and raising awareness about MS and continence health, Justine has published several books and is a speaker for events.

"My most recent book, Moxie, which came out in March 2026, is about how I built resilience — it explores grit, determination, courage, and how I’ve bounced forward from every challenge, including MS and cancer, showing that after hardship, you’re never the same person — you grow and change," she says.

Justine also emphasises the importance of self-advocacy in navigating a complex healthcare system.

"We’re fortunate in Australia that if one professional isn’t listening, we can find another who will. But it took finding the right people for me to finally feel understood and supported,: she says.

About multiple sclerosis

According to MS Australia, multiple sclerosis (MS) is the most common acquired chronic neurological disease affecting young adults, often diagnosed between the ages of 20 to 40 and, in Australia, affects three times more women than men. As yet, there is no cure. There is no known single cause of MS, but many genetic and environmental factors have been shown to contribute to its development. In MS, the body’s own immune system mistakenly attacks and damages the fatty material – called myelin – around the nerves. This results in a range of symptoms, but no two people experience MS in the same way.