Two studies are shedding new light on the high number of patients across Canada who are suffering in silence because of a taboo medical condition that many people are too embarrassed to talk about.

The Canadian studies, which were carried out by the same group of researchers, found that urinary and fecal or bowel incontinence are both widely underreported and underdiagnosed in Canada, impacting thousands of patients who could potentially benefit from medical care that would improve their quality of life.

“A lot of people are embarrassed about these conditions and likely try to keep it a secret. They don’t talk to their physicians about it, and as a result, they often don’t have access to treatment that could help them. Incontinence is very much a hidden condition,” said Dr. Dean Elterman, a urologic surgeon and co-author of the studies.

Dr. Elterman, an Associate Professor of Urology at the University of Toronto, and his colleagues conducted a systematic review and meta-analysis of published literature reporting on fecal incontinence to gauge prevalence and estimate the number of people afflicted by the condition across Canada.

In a study published in September 2024, Estimating the Number of Canadians Suffering from Fecal Incontinence Using Pooled Prevalence Data from Meta-Analysis, the researchers estimated between one million and 1.5 million Canadians live with fecal incontinence. The researchers determined prevalence in women is slightly higher than in men – approximately eight per cent of men are impacted by fecal incontinence compared to between eight per cent and 12 per cent of women.

In an earlier study published in 2023, the authors carried out a similar systematic review and meta-analysis of previous research and articles on urinary incontinence to better understand its impact. The study, Systematic Review and Meta‐Analysis of Urinary Incontinence Prevalence and Population Estimates, estimated 1.4 to 2.5 million women and 1.3 to 2.2 million men in Canada suffer from overactive bladder.

It was an eye-opener for researchers to get a better understanding of the magnitude of how many patients may be impacted by incontinence, said co-author Hamid Sadri, Director of Health Outcomes, Research and Technology at Medtronic Canada.

“The numbers are huge. These two conditions are extremely underdiagnosed, which means there are thousands of people who aren’t getting their health needs met,” he said. “It can be really devastating for people. A lot of these people – especially the ones with severe cases of fecal incontinence – are home-bound.”

But because of the significant stigma surrounding incontinence, many people dealing with it don’t discuss it with anyone – even with their health care providers. As a result, many don’t receive a diagnosis and don’t access potential treatments such as medication, pelvic physiotherapy, dietary changes or medical interventions. Left undiagnosed and untreated, fecal and urinary incontinence can lead to other health problems.

“It can become a vicious cycle when the incontinence isn’t addressed where the patient then has to deal with other related issues that impact their health, like anxiety, depression and other mental health challenges like social isolation,” Sadri said.

Creating more awareness about the prevalence and impact of incontinence – among the general public and among health care providers – could help reduce stigma about the medical condition and lead to more people accessing support and treatment, researchers said.

In some cases, medication and lifestyle changes are enough to help patients address incontinence. However, in severe cases where these lines of treatment aren’t effective, some patients are treated through a minimally invasive procedure called sacral neuromodulation (SNM) therapy.

The procedure targets communication problems between the sacral nerves, which control the pathways of bowel and bladder function, and a patient’s brain. An implanted neuromodulator —sometimes referred to as a pacemaker for the bowel or bladder — delivers mild electrical impulses to correct (modulate) miscommunication between the brain and the sacral nerves, helping patients regain control over their bodily functions.

A previous Canadian study showed that SNM is a cost-effective option for incontinence treatment. While the treatment has been available for more than 25 years in Canada, it is not yet widely offered, and fewer than 500 patients nationwide receive implants annually.

The authors of the studies hope their research will help reduce the stigma surrounding incontinence, raise awareness amongst the patient population, and propel healthcare leaders across the country to increase access to treatment.

 “We have a better understanding of how big this problem is through our research. Now we need to raise awareness about the significant impact of incontinence so we can help the people suffering in silence get the help they deserve,” Dr. Elterman said.