Pilates instructor, 27, reveals she hasn’t urinated in more than TWO YEARS because a rare condition caused her bladder muscles to ‘clamp shut’
- Zoe McKenzie was healthy until she started having pain while urinating in 2016
- Dismissing her symptoms as cystitis, she would pass only 300ml of urine a day
- Diagnosed with Fowler’s Syndrome; occurs when bladder muscles do not relax
A pilates instructor has not urinated in more than two years after a rare condition caused her bladder muscles to ‘clamp shut’.
Zoe McKenzie, now 27, was fit and healthy until she started having pain while urinating in 2016.
Dismissing her symptoms as cystitis, Miss McKenzie, of Colchester, Essex, was soon only passing 300ml of urine a day. This is far less than the 800 to 2,000ml that is considered normal.
It was not until April 2017 that she was diagnosed with Fowler’s Syndrome, which occurs when the muscles that prevent incontinence fail to relax when a person goes to the toilet.
Miss McKenzie, who has depended on a catheter for the past two years, claims she ‘always’ needs the toilet, with the urge being so severe it leaves her ‘nauseous’.
Zoe McKenzie has not urinated in more than two years after a rare condition caused her bladder muscles to ‘clamp shut’. The former pilates instructor is pictured with her boyfriend Dejan Stojadinovic, who she met while living in Australia in 2016
Miss McKenzie was forced to return home when her condition became so severe she was passing just 300ml of urine a day; 800-to-2,000ml is ‘normal’. She is pictured in hospital, undergoing a string of tests, before she was diagnosed with Fowler’s Syndrome in April 2017
Miss McKenzie is pictured wearing a heart monitor, which was required for her hospital tests, on the beach. She claims she ‘always’ needs the toilet, which leaves her ‘nauseous’
Speaking of her condition, Miss McKenzie said: ‘It was as if my bladder muscles were clamping shut. I was retaining all this pee.
‘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.
‘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.’
Miss McKenzie, who also has lupus, was living in Sydney when she first had bladder issues, including pain and an increased need to urinate.
Her GP initially thought she might have cystitis, which occurs when the bladder becomes inflamed due to an infection. However, tests came back negative.
‘I was getting repeated bladder infections, but also having these flu-like symptoms,’ Miss McKenzie said. ‘I was in near-constant pain as my bladder would spasm.
‘In the end, I got so sick I had to come back to the UK in 2016. I also had to give up my pilates instructing and physiotherapy jobs, as I was simply too unwell to do them.’
Her symptoms became so severe, Miss McKenzie was forced to move home with her boyfriend Dejan Stojadinovic, now 29, who she met in Australia.
‘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,’ she said.
Miss McKenzie was fit and healthy until she started having bladder pain in 2016
She underwent a string of tests at Cambridge’s Addenbrookes Hospital. In April 2017, she had a urodynamics test, which assesses how well the bladder, muscles and urethra hold and release urine. Doctors detected an abnormality with her urethral sphincter
Once fit and active, Miss McKenzie has not worked as a pilates instructor in three years
Back in the UK, Miss McKenzie underwent a string of tests at Cambridge’s Addenbrookes Hospital.
In April 2017, she had a urodynamics test, which assesses how well the bladder, muscles and urethra hold and release urine.
Doctors detected an abnormality with her urethral sphincter, which regulates the flow of urine from the bladder to the urethra, and diagnosed her with Fowler’s Syndrome.
‘I’d never heard of Fowler’s Syndrome before I was diagnosed,’ Miss McKenzie said.
‘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.
‘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 Fowler’s, 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.’
Pictured in hospital, Miss McKenzie was eventually forced to self-catheterise, which involves inserting a flexible tube into the bladder that collects urine in a bag outside the body. When this became too painful, she had a permanent catheter fitted in December last year
She claims her boyfriend (pictured together) is ‘incredibly supportive’ of her condition
Despite all she has endured, Miss McKenzie manages to smile through the near-constant pain
Shortly after her diagnosis, Miss McKenzie became unable to pass any urine at all.
This left her with no choice but to self-catheterise, which involves inserting a flexible tube into the bladder that collects urine in a bag outside the body.
‘It was absolute agony,’ Miss McKenzie 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-catheterise 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.’
WHAT IS FOWLER’S SYNDROME?
First described in 1985, Fowler’s syndrome is a cause of urinary retention in young women.
Urinary retention in young women is not common but can be quite debilitating. It is unsure how many people have this condition.
The abnormality lies in the urethral sphincter (the muscle that keeps you continent).
The problem is caused by the sphincter’s failure to relax to allow urine to be passed normally.
There is no neurological disorder associated with the condition.
Up to half the women have associated polycystic ovaries.
Currently the treatments for Fowler’s syndrome are being researched and developed, including that of sacral nerve stimulation.
Source: University College London
Miss McKenzie persevered until December last year, when it all became too much.
‘I’d be getting about two hours of sleep a night, as I would have to keep getting up to catheterise, before limping back to bed in agony, trying but failing to sleep as my body kept telling me I was desperate for the loo,’ she said.
That month, Miss McKenzie was fitted with a permanent catheter tube.
This had to replaced in June when the original tube stopped working.
Miss McKenzie is on a waiting list for a sacral nerve modulator, which uses small electrical pulses to correct the messages running along nerve pathways. This has been linked to reduced ‘urge incontinence’ and pelvic pain.
While she waits, Miss McKenzie is speaking out to reduce the stigma around catheters.
‘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,’ she said.
‘People may find their body image hugely impacted or even things like their sex lives. Catheters can make sex pretty impossible.
‘I really hope we can break taboos and start talking about things like catheters.’
Miss McKenzie, who has been unable to work for the past three years, is launching a website called Actively Autoimmune, which aims to make exercise more inclusive for disabled people.
‘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,’ she said.
‘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.
‘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.’
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