A young woman unable to urinate because of a rare condition claims she was denied access to a disabled toilet in Greggs until she showed her catheter bag.

Evan Francis, from Minster-on-Sea, says she was told she could not use the loo at the bakery’s Sheerness branch after a staff member questioned whether she actually had a disability.

It was only when the 29-year-old showed the worker a urinary bag strapped to her leg that she was believed.

The unsavoury incident is just one of the difficulties she has faced because of the “invisible” nature of Fowler’s Syndrome – a urethral sphincter condition that affects as few as two in a million women per year.

She first started experiencing symptoms – mainly recurring urinary tract infections (UTIs) – at the start of last year, and in April was fitted with a catheter to ease her discomfort.

It was the same week that she experienced her ordeal in Greggs.

“I asked to use the disabled toilet and the assistant said to me ‘You’re not disabled, though’,” she recalled.

“And so I said ‘How do you know that?’. I decided to just get the bag out and say ‘Does this make me disabled?'”

Doctors had initially attributed Evan’s symptoms to stress after she was made redundant and went through a break-up in November 2023, but she was eventually diagnosed in July and fitted with an indwelling urinary catheter attached to a urinary leg bag.

She was later surgically fitted with a suprapubic catheter to her lower abdomen, which has to be changed every eight to 10 weeks, leaving her vulnerable to further infections – with Evan spending 96 hours in A&E in 2024 alone.

Terrified she will be “like this forever”, Evan says she hopes she will be eligible for surgical intervention, but in the meantime, her rare condition has had a dramatic effect on her self-esteem, dating life and mental health.

“I’ve got a tube hanging out my vagina – I don’t feel sexy, I don’t feel my best, I don’t feel me,” she said.

“Before Fowler’s, I was very, very busy and had no problems doing anything, really. I was in control of myself and doing everything I wanted, when I wanted.”

Fowler’s Syndrome prevents the urethral sphincter from relaxing and thus releasing urine, with an incidence rate of between 0.2 and 0.3 cases per 100,000 women, according to a 2021 study published in the International Journal of Environmental Research and Public Health.

“They found two litres of urine trapped in my bladder – a woman’s bladder should only hold about 500ml,” Evan said.

Her initial attempts at self-catheterisation failed due to bloating from fluid retention, which made her look “nine months pregnant”.

Instead, she was fitted with a suprapubic catheter – a drainage tube inserted into the bladder via an incision in the lower abdomen.

Evan has also experienced several stuck catheters, causing “unbearable pain” that require an A&E visit.

Living with Fowler’s Syndrome has also affected Evan’s confidence, prohibiting her from advancing her career, dating, or even buying property like her peers.

“I’m living at home, not only by choice, but also as a bit of a safety net because I could not afford to move out and go on the property ladder with my health so up and down,” she said.

Evan currently lives with her mum, Chere, and her mother’s partner, Nick, while her dad, Peter, has also frequently taken her to A&E – and she is grateful that, despite her parents’ divorce, they have worked together to support her through her illness.

She has also taken consolation in sharing her experiences on TikTok, under the handle shortstuffcomms, which she originally started to showcase her freelance communications career.

Although freelancing has offered flexibility, she said the financial instability is hard to manage – and is a source of anxiety ahead of prospective surgery.

“I’m terrified that I’m going to be left like this forever because the understanding around this condition is still really vague,” she said.

Evan said she hopes to be eligible for sacral nerve modulation, which would involve a pacemaker being fitted into the nerve in her back that controls the sphincter muscle, potentially allowing her to urinate normally again.

Despite her challenges, Evan is a vocal advocate for better awareness of rare bladder conditions like hers, supported by the charity Fowler’s Syndrome UK.

She has also led awareness talks at her GP surgery and written to her MP about catheter care for young people and women.

To avoid events such as those in Greggs, Evan now has her own Radar key to prevent future access problems, but believes better awareness is needed.

A spokesman for Greggs said: “We’re really sorry to learn that this customer request was not dealt with in line with our company policy.

“We will be taking steps to make sure all shop colleagues are aware of these policies to ensure this does not happen again.”