A bladder condition nearly destroyed my kidneys and made me realise it's time we talked about incontinence

I am 35 years old and for three years I've been living with incontinence, a condition that's often assumed to just affect elderly people. 

I know some people who have continence issues, but until recently I had never spoken to anyone with a similar experience to me, for whom it has been life-threatening or dramatically affected their day-to-day.

I just assumed I was a rare case, but I then I learned I was not, and as a journalist with ABC News, I sensed this was an issue that might resonate with our audience and I was keen to investigate why we aren't talking about incontinence.

The first signs I was dangerously ill

In 2020, I was living and working in Dubai. As the COVID-19 pandemic spread around the world, I started feeling tired and rundown.

As the months passed, I got progressively sicker.

I couldn't eat much for fear of sharp stomach aches, I woke up most nights in a sweaty fever, and my back ached — which I put down to sitting around too much during lockdown.

As I anxiously watched the news of Australian borders closing to citizens, I decided to head home.

I saw a GP and rattled off a huge list of symptoms: stomach aches, weight loss, night sweats, weakness, dizziness.

She sent me for a host of blood tests and when I returned for the results told me I had kidney failure, with a glomerular filtration rate (GFR) — which is used to measure kidney function — of 17. It should have been 100 for someone of my age.

I was referred to a specialist and put on the emergency list.

Over three weeks, I spent time in and out of hospital, having tests and answering questions about my background, health and travel.

The doctors found my bladder was distended and infected and wasn't emptying.

They didn't know what was causing it, but it was damaging my kidneys, so a catheter was inserted. 

Fast-forward through a bladder biopsy, CT, endless blood tests and more physically invasive tests, and weeks later an MRI found that I had a tumour on my spinal cord that had damaged the nerve endings communicating between my brain and bladder.

It was swiftly removed through surgery, but the damage was done to both my nerves and my kidneys.

I will need a kidney transplant at some stage in my life, and I now live with incontinence. I can't physically urinate myself as my brain can't tell my bladder to do so.

I use self-catheterisation to urinate, which means I have to carry portable catheters that look like small straws everywhere.

It's a life-long condition but I am alive and relatively healthy, I can do the things I love like chasing my nephews, playing sport and travelling, so it seems a small price to pay.

Telling the stories 

Because of my experience, in January I pitched some stories to my editor about World Continence Week — telling the stories of Australians with lived experience of incontinence.

As I researched, I learnt that incontinence affects an estimated one in four Australians. But of that number, roughly 70 per cent do not seek medical help for fear of embarrassment or humiliation.

Why wasn't this something we were talking about?

It's not just about people who get some leakage — continence issues can be life-threatening as I'd learned, and people didn't know. 

If I'd known my symptoms were not normal, not safe, would I have sought more medical help sooner? Probably.

'Suffering' incontinence

Understanding that it's a sensitive topic, I knew it might be difficult to find people who suffer incontinence who were willing to talk about it. 

The editorial team laboured over the language.

We are careful not to use a phrase like "suffers from" for various diseases, conditions or disabilities. But for incontinence, I pushed back.

I do suffer from incontinence, there's no redeeming factor.

Not allowing us to use the word "suffer" from incontinence makes it sound like there's an upside, or it shapes who we are on a fundamental level. 

I felt that mitigated the experience of incontinence.

People suffer through it. As someone with lived experience, every time I go to the toilet I am reminded of my inability to pass urine, a basic human function.

So we included it.  

The response

The response was astounding from the get-go. 

The Continence Foundation offered up some of its people for interviews.

We did an audience call-out, which garnered a great response.

People were willing to share their stories, tell me about their life with incontinence.

Not all were willing to be identified. I understood why. 

"Shannon", who didn't want to be identified, had their first "accident" on their 28th birthday and now, after eight years of suffering daily incontinence, is fearful of leaving the house in case they can't get to a toilet in time.

Speaking to Shannon, I was shocked. Shannon has had multiple tests, seen urologists and tried medication to no avail.

"It could be relating to mental health and stress, I have depression and OCD," they reflected.

"But I've had no clear diagnosis. It's six months on the waitlist for a urologist [appointment] because they don't see the issue as life-threatening.

"It might not be physically life-threatening [but] I'm at the point where it feels mentally life-threatening."

Shannon hasn't told their workplace about their condition for fear of judgement.

It made me want to share more stories, to reassure people that incontinence is something you can make easier to live with. There is help.

Another person I connected with was Lisa, who was a nurse during the pandemic and resigned from her role during the COVID-19 outbreak squad following issues with constantly wetting herself while wearing PPE. 

Lisa was happy to be identified for her story, which made it all the more incredible.

This woman had been through immense stress and difficulty, all while helping people during COVID-19. 

Olympian Jana Pittman was open and frank about suffering incontinence, and being a junior doctor gave a unique insight.

"We need to own this space," she told me. 

When doing these interviews, I shared a bit of background about my story.

I felt it was important for people to know I wasn't virtue signalling.

I wanted them to feel comfortable and understood. It's not easy to admit you either can't urinate or that you can't hold on.

When speaking to people affected by incontinence, there were common themes; no-one brings this up, no-one talks about it, it's lonely, I feel embarrassed, I didn't know where to turn. 

But I ask why?

Why are we hiding this medical issue when we don't hide other conditions? 

Writing these stories has empowered me to speak more openly. If Jana and Lisa are willing to, why not me? 

I've since received many messages on social media and emails from people thanking me for sharing these stories, telling their plight. I'm touched that a story has managed to affect people or bring light to an issue that is too often hidden and hushed up. 

I wanted people to know they're not alone, it's common, it sucks and it is OK to talk about it.