Key Points
- One in four Australians aged 15 years and over are affected by incontinence.
- Many are still not seeking help due to the stigma around the issue.
- Experts say the condition won't be resolved on its own and advise people to seek help.
Christin Young was just a teenager when she began to experience incontinence.
She was travelling on a train between Sydney and Wollongong when she realised what had happened.
"It was incredibly embarrassing," Ms Young told SBS News.
"I was sitting in a train carriage for two hours thinking: 'Oh my god, do people know?'
"It was a kind of scary thing that happened ... and over time it got worse and worse and started to happen every day."
Ten years later, she still does not know the cause.
While the 26-year-old has been able to identify triggers - such as liquid consumption, stress, movement, and certain types of food - medical tests have been inconclusive.
They have also not been able to find a cure, and she instead manages her incontinence through careful planning and using sanitary products.
As well as the physical symptoms, she has also struggled with the mental load of incontinence.
"Until I can get a medical explanation as to why, it's doing trial and error to see how I can live my life despite it all," she said.
"I've been scared to go to places and events that don't have bathrooms and sanitary disposals, like going to concerts, camping and that kind of stuff is a bit of an issue."
Ms Young says she often wonders why she's been affected.
"None of my friends my age - at least that I know of - have got these symptoms, so what is wrong with me?"
What is incontinence and how common is it?
Incontinence refers to bladder and bowel control problems.
Symptoms of urinary incontinence can range from an occasional leak when laughing or sneezing, to a complete inability to control the bladder.
Bowel incontinence symptoms can include leaking from the bowel, being unable to control wind, and straining to empty the bowels.
Continence Foundation of Australia CEO Rowan Cockerell says seeking treatment can reduce the disruptive impacts of incontinence. Source: Supplied / Rowan Cockerell
Continence Foundation of Australia CEO Rowan Cockerell said that research is expected to confirm anecdotal evidence that the true figures are growing.
"We know just from basic data we're receiving now that number is going to grow - and it's going to be significant by 2030," she told SBS News.
What help is available?
Ms Cockerell said seeking help early can make a difference in potentially curing the condition, or at least minimising its disruptive impact if left untreated.
"Every age group has their issues and the causes ... are quite complex," she said.
"Even down to things like losing confidence and mental health issues, that can often impact on a person because they're so depressed about not being able to do what they want to do."
She said treatment options are varied and awareness of resources available can make a difference in people seeking help.
"And it may be that having some time with a physiotherapist to learn about pelvic floor exercises, or an appointment with a continence nurse so they can talk you through a program or give you advice on incontinence products can be the difference between feeling really good about yourself, or really not being able to get out of the house," she said.
Ms Cockerell said seeking help can be useful for getting useful information including lifestyle changes, support for accessing products, and the existence of tools like the that allows people to plan their social activities ahead of time knowing what public restrooms are nearby.
Research by Deloitte Access Economics in 2021, commissioned by the Continence Foundation of Australia, found incontinence is costing the Australian economy $67 billion annually when measuring burden of disease, health costs, work productivity losses, carer and continence aid costs.
Misconceptions and stigma
Ms Cockerell said stigma is preventing people from seeking help, but sharing stories helped overcome barriers.
She welcomed from advocacy high-profile Australians such as AFL legend Robert "Dipper" DiPierdomenico.
Mr DiPierdomenico ended up in the emergency department with severe bladder pain because he ignored the signs.
"He now realises that if he talked about it ... and sought help, then he would have done things differently," she said.
Retired AFL player Robert DiPierdomenico has been open about his experience with incontinence. Source: AAP
Incontinence not just a 'seniors issue'
Ms Young believes there is a misconception that incontinence only impacts older people.
When she has visited urinary clinics in hospitals, she says the information is largely targeted at people older than 50.
"I completely understand that it's quite a common thing for people in that age group, but there is nothing that validates my age group," she said.
"I had no idea until about four years ago that this is actually a common thing, I had zero clue. I thought I was a bit of a freak when it happened to me."
This lack of awareness has motivated her to share her story in the hopes of reducing the stigma and providing visibility for other young people experiencing incontinence.
"It's not a dirty or awful thing to have — you can continue living your life with a few easy adjustments," Ms Young said.
"It's not a shameful thing."
