A 29-year-old woman living with a rare condition that prevents her from urinating claims she was denied access to a disabled toilet at a Greggs bakery until she revealed her catheter bag. In July 2024, Evan Francis, a freelance communications professional from Minster-on-Sea in Kent, was diagnosed with Fowler’s Syndrome—a urethral sphincter condition that affects as few as two in a million women each year.
Initially, doctors misdiagnosed her recurring urinary tract infections (UTIs) as stress-related, attributing them to her redundancy and a relationship breakdown in late 2023. However, after persistent symptoms, Evan was fitted with an indwelling urinary catheter attached to a urinary leg bag, which marked the beginning of her challenging journey.
In April 2024, shortly after her diagnosis, Evan attempted to use an accessible toilet at a local Greggs. She was informed by an employee that she was “not disabled,” a statement that struck her as both discriminatory and ignorant. “I asked to use the disabled toilet and the assistant said to me ‘You’re not disabled, though’,” Evan recounted. In response, she revealed her catheter bag, asking, “Does this make me disabled?”
The high street bakery later issued an apology, acknowledging the incident as a failure to adhere to their company policies. A spokesperson for Greggs stated, “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.”
Following her initial catheterization, Evan underwent further medical evaluations, including a traumatic urodynamics test that left her feeling vulnerable and exposed. “I was with quite an old-school urologist who used an iPhone torch to find my urethra,” she described. “He had lots of students in the room when he was doing this test – there was no dignity.” The procedure resulted in bleeding, which added to her distress.
By July 2024, urologists revealed that Evan had Fowler’s Syndrome, a condition that prevents the urethral sphincter from relaxing and thereby releasing urine. A 2021 study published in the International Journal of Environmental Research and Public Health notes that the incidence rate of this syndrome is between 0.2 and 0.3 cases per 100,000 women. “They found two litres of urine trapped in my bladder – a woman’s bladder should only hold about 500ml,” Evan explained.
Initially, Evan attempted self-catheterization but faced complications due to bloating, which made her appear “nine months pregnant.” Consequently, she was fitted with a suprapubic catheter—a drainage tube inserted into the bladder through an incision in her lower abdomen. This catheter must be changed every eight to ten weeks, leaving her vulnerable to infections. In 2024 alone, Evan spent a staggering 96 hours in A&E due to complications arising from her condition.
Living with Fowler’s Syndrome has significantly impacted Evan’s self-esteem 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 lamented. “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.”
Her condition has also affected her social life and career prospects. “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 shared. Currently, she resides with her mother, Chere, and her mother's partner, Nick, while her father, Peter, has frequently accompanied her to the hospital.
The emotional toll of her condition is profound. Evan feels “constantly paranoid” about odors and has struggled with the invisible nature of her disability. Her experiences have led her to advocate for better awareness around rare bladder conditions, supported by the charity Fowler’s Syndrome UK. She has organized awareness talks at her GP surgery and has written to her MP about catheter care for young people and women.
Despite her challenges, Evan finds solace in sharing her story on TikTok, where she originally aimed to promote her freelance communications career. She hopes to raise awareness and understanding of her condition, which remains largely unknown to the public. “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 is optimistic about potential surgical interventions that could improve her quality of life. She expressed hope for eligibility for sacral nerve modulation, which involves fitting a pacemaker into the nerve controlling the sphincter muscle, potentially allowing her to urinate normally again.
As she navigates the complexities of her condition, Evan remains a vocal advocate for those with similar challenges, striving to foster a greater understanding of Fowler’s Syndrome and the importance of accessible facilities for individuals with disabilities. Her journey highlights the need for compassion and awareness in public spaces, especially regarding the often-invisible nature of many health conditions.
