A pilates instructor who has not urinated in more than two years, after being struck down by a rare ailment that makes her bladder muscles “clamp shut," says people struggle to understand when she says she “cannot wee."
Eating well and taking regular exercise, Zoe McKenzie, 27, was fit and healthy until 2016, when she started having pain when urinating and feeling she needed to pass water more often – symptoms she believed to be of cystitis, a bladder inflammation often caused by an infection.
Despite her urgency to urinate, Zoe, of Colchester, Essex, could only pass around 300ml of water a day – far less than the 800 to 2,000ml considered to be normal, according to the U.S. National Library of Medicine.
Eventually, a test in April 2017 revealed she had Fowlers Syndrome, a rare condition in which the urethral sphincter – the muscle that keeps people continent – cannot relax, leaving sufferers unable to pass water normally.
Now reliant on a catheter, Zoe said: “I'd never heard of Fowlers Syndrome before I was diagnosed.
“The way I describe it when people ask – which they usually do, as it's such a little-known condition – is having that feeling of being desperate for the loo, to the point where you almost feel a bit nauseous, all the time and being unable to go."
She continued: “I say to people, 'Imagine if you just stopped being able to pee one day? What would you do?'"
Zoe was living in Sydney, Australia, where she met her boyfriend of three years, Dejan Stojadinovic, 29, when she had bladder issues for the first time – experiencing waves of symptoms, like bladder pain and an increased need to urinate, which would pass almost as quickly as they hit.
A local doctor at first thought she might have cystitis, a common urinary tract infection, but tests for it were negative and, meanwhile, her symptoms intensified.
“I was getting repeated bladder infections, but also having these flu-like symptoms," she said. “I was in near-constant pain as my bladder would spasm," Zoe explained.
“In the end, I got so sick that I had to come back to the UK in 2016 with Dejan. I also had to give up my pilates instructing and physiotherapy jobs, as I was simply too unwell to do them.
“Dejan was incredibly supportive and repeatedly told me I wasn't a burden, but I couldn't help feeling like one, as I needed so much help and care and my health meant we had to make this huge move."
Once back in England, Zoe had a string of tests at Cambridge's Addenbrookes Hospital where, in April 2017, she had urodynamics testing, which examined how the bladder, sphincters and urethra were holding and passing urine.
This enabled doctors to detect an abnormality with her urethral sphincter – the muscles usually used to pass urine. It was not relaxing as it should, leading to a diagnosis of Fowlers Syndrome.
She explained: “It was as if my bladder muscles were clamping shut. I was retaining all this pee."
Zoe explained: “At first, I could sometimes manage to pass a few drops – around 300ml a day – but whenever my bladder got full, the muscles just closed off, like someone turning off a tap.
“I'd be desperate for the loo, but unable to go. It was absolute agony."
Although her daily pain persisted, Zoe was at least relieved to finally have a diagnosis.
She continued: “It all made so much sense. I'd been getting the repeated infections because my bladder literally couldn't empty.
“In the past, when cystitis had been mentioned, I would read through the symptoms, but think that didn't really sound like what was happening.
“With Fowlers, though, I thought, 'That's it – that's me.' It was such a relief to know I'm not the only one out there like this."
According to University College London, Fowlers Syndrome is typically seen in women in their 20s and 30s, but the exact cause is still unknown.
It can happen either spontaneously, as in Zoe's case, or following an operation or childbirth.
Shortly after her official diagnosis, by which point she could not pass urine at all, Zoe had no choice but to start self-catheterizing – inserting a tube into her bladder to empty it.
“It was absolute agony," she said. “Where my muscles had clamp shut, I would have to force the catheter in, which would cause these horrible spasms.
“It made things really difficult, day-to-day. I wouldn't want to go out, as some public loos would be tricky to self-catheterize in. Some people can do it standing up, but I found it easier to sit down, which is impossible in toilets where the floor is unclean, or there's a gap at the bottom of the cubicle."
Zoe continued: “Though it was painful, I managed to self-catheterize until December 2018. I'd been having to do it more and more, but in the end, I couldn't keep up.
“I'd be getting about two hours of sleep a night, as I would have to keep getting up to catheterize, before limping back to bed in agony, trying but failing to sleep as my body kept telling me I was desperate for the loo."
In December 2018, Zoe, who also has lupus, an autoimmune condition that causes inflammation to the joints, skin and other organs, had a permanent catheter tube fitted, switching to a different type in June this year when the original one stopped draining.
Known as an indwelling catheter, it is held in place by an inflated balloon in the bladder and emptied via a valve.
By speaking out, Zoe, who has also had Botox injections in her bladder to treat her condition, and is on the waiting list for a sacral nerve modulator to be inserted, which uses small electrical pulses to correct the messages running along nerve pathways, hopes to help normalize catheters.
She said: “Thankfully, I haven't personally had any negativity about using one – people are mainly just curious – but they can affect all areas of your life."
“Luckily, Dejan has really helped me to stay positive, even laughing about it when my catheter leaked everywhere on a 12-hour flight from Dubai," Zoe recalled.
“The main thing is to just try to be realistic, and to change your mindset. Now, to me, managing a five-minute walk isn't a pathetic day, it's a great one.
“You've just got to tweak the way you think about things."
But Zoe is extremely aware that some people's self-esteem is shattered by conditions like Fowlers.
She continued: “People may find their body image hugely impacted, or even things like their sex lives. Catheters can make sex pretty impossible.
“But the way I see it, I don't have a choice."
“I really hope we can break taboos and start talking about things like catheters," Zoe said.
“I know the average person probably doesn't feel comfortable chatting about them, but there's a whole world of young women, like me, with bladder issues out there."
Now, Zoe has set up an Instagram account to help other chronically ill people and has found it an immense help to make contact with other women out there living with Fowlers Syndrome.
She also hopes that, by sharing her story, she will encourage people to be more mindful of invisible illnesses.
Unable to work for the past three years, she is in the process of launching an exciting new venture called Actively Autoimmune, which makes exercise more inclusive, by sharing tips and work-out videos aimed at chronically ill and disabled people.
She said: “Time over the past few years has gone both quickly and slowly. When I first got ill, I thought I'd be off work for a few weeks and that'd be it – but instead, it turned into three years."
Zoe added: “Not working in a society where everyone is so busy and productive all the time was hard to take, but I'm excited to start building up Actively Autoimmune.
“Scrolling through Instagram, looking at all the things I couldn't do, used to make me really angry, so I hope I can help others out there feel more included.
“It's also really important to me to get the message out there not to judge others. I constantly get people saying I look fine or struggling to understand that I mean it when I say I literally cannot wee."
“As Fowlers Syndrome isn't very well known, it's not like I can just say I have it and people with automatically understand," she said.
“I have a 'Can't Wait' card for toilets, which I hate using as you inevitably get stared at when you're cutting a toilet queue, so I'd really like it if people were a bit more mindful of invisible illnesses."
