Pilates instructor Zoe McKenzie has always been fit and healthy, but in 2016 she began experiencing pain while weeing.

The 27-year-old from Essex felt excruciating pain every time she went to the toilet.

Though she kept feeling the need to pee, she could only pass around 300ml of urine a day – far less than the 800 to 2,000ml considered to be normal, according to the US National Library of Medicine.

At the time Zoe believed the symptoms to be of cystitis, a bladder inflammation often caused by an infection.

A year later she was diagnosed with Fowlers Syndrome, a rare condition in which the urethral sphincter – the muscle that keeps people continent – can’t relax.

That means her bladder muscles are essentially ‘clamp shut’, leaving her unable to pee normally.

Zoe is now reliant on a catheter which is held in place by an inflated balloon in the bladder and emptied with a valve.

She has also had Botox injections in her bladder 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.

‘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,’ said Zoe.

‘I say to people “imagine if you just stopped being able to pee one day? What would you do?”

‘I’d be desperate for the loo, but unable to go. It was absolute agony.’

The condition worsened for Zoe before her diagnosis and she had to give up teaching pilates and her physiotherapy jobs.

After being diagnosed, by which point she could not pass urine at all, Zoe had no choice but to start self-catheterising – inserting a tube into her bladder to empty it.

‘I would have to force the catheter in, which would cause these horrible spasms,’ she said.

‘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.’

‘Every night 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 continued self-catheterising for another year until eventually giving up.

By speaking out about her condition, she hopes to normalise catheters

‘People may find their body image hugely impacted, or even things like their sex lives,’ says Zoe. ‘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.’

She has set up an Instagram page raising awareness as well as a new venture called Actively Autoimmune, which makes exercise more inclusive.

‘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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