Caris Gibson, a 21-year-old woman from Oxfordshire, faces a devastating medical battle with a rare urinary retention condition that threatens her bladder and has left her in constant pain for over two years. Her struggle with Fowler's Syndrome has prompted an urgent fundraising campaign to cover expensive private treatment, as NHS waiting lists offer little hope of timely relief.
A Misdiagnosis That Led to Years of Suffering
Caris first experienced symptoms in January 2024, initially attributing her painful and difficult urination to a common urinary tract infection. "I was waking up in the morning and I couldn't go to the toilet because I had, what felt to me like, a UTI," she recalled. The situation rapidly deteriorated, leaving her completely unable to use the toilet normally and requiring frequent visits to A&E.
For months, medical professionals could offer little beyond antibiotics, leaving Caris in a cycle of pain and uncertainty. "I'd end up waking up really early in the morning and having to sit in the bath and try and go to the toilet there, because I couldn't do anything on the toilet myself," she explained. The constant urinary retention caused her bladder to expand to a dangerous capacity of 1.2 litres, far beyond the healthy 500ml limit.
The Reality of Living with Fowler's Syndrome
Fowler's Syndrome is a rare, chronic condition primarily affecting women in their 20s and 30s, characterised by the urethral sphincter's failure to relax properly. According to Fowler's Syndrome UK, this leads to urinary retention, substantial pain, and recurrent infections that can progress to serious complications including sepsis.
Caris's journey through various treatments has been fraught with challenges. After attempting self-catheterisation, she found the procedure increasingly difficult due to her tight urethral sphincter. "I couldn't do self-catheterisation because I couldn't get it in, and it clamped," she said. This led to the fitting of a permanent catheter in June 2025, which itself caused excruciating discomfort and additional infections.
The Emotional and Physical Toll
The constant pain and medical interventions have taken a severe toll on Caris's daily life and mental wellbeing. "Recently, it's been particularly bad. I was waking up at three o'clock in the morning and not being able to go back to sleep because I had a constant feeling of needing the toilet," she described. At just 21 years old, she finds herself having to wear a urine collection bag to work, lamenting that "it's no life to have a bag attached to you."
Her mother, Jill Lumsden, 53, has witnessed the heartbreaking impact firsthand. "I don't want to see her have to deal with her mental health as well as her physical health... It's just heartbreaking," she said. The persistent infections have led to Caris developing resistance to multiple antibiotics, further complicating her treatment options.
The Desperate Search for Solutions
After finally receiving a formal diagnosis of Fowler's Syndrome in November 2025, Caris faces continued uncertainty. Despite being on an NHS waiting list since April 2025, she was informed she's unlikely to receive an initial consultation until April 2026. This delay has forced her family to seek private alternatives despite the substantial costs involved.
A private urologist has suggested trying a sacral nerve stimulator (SNS), a device that delivers gentle electrical pulses to nerves in the lower back to potentially improve bladder control. However, there are no guarantees of success. "If it works, then that's fantastic," said Jill. "But if there's a chance that it isn't, then he was quite clear with what the other option would be... We just don't want to think about what the other option is."
The alternative, should the SNS prove unsuccessful, would likely involve removing Caris's bladder entirely and fitting a permanent urostomy bag.
A Mother's Extraordinary Fundraising Effort
Determined to help her daughter, Jill has launched an ambitious fundraising campaign with a target of £7,000, though she acknowledges the actual treatment costs will be significantly higher. To raise both funds and awareness, she has committed to running five kilometres every day throughout 2026.
"Five kilometres is half an hour of my day. And compared to what she is going through in her day – she can sit in the bathroom for half an hour and be in pain," Jill explained. "There's a physical and a mental side to it, much like her position at the moment." The daily running challenge aims to highlight the constant battle Caris endures and bring attention to this rarely-discussed condition.
At the time of writing, the fundraising total had reached nearly £2,400. The campaign represents not just a financial effort, but a powerful statement about the challenges faced by those with rare medical conditions navigating the healthcare system.
Caris's story underscores the difficult realities of living with a chronic, poorly-understood condition and the lengths families must sometimes go to secure appropriate treatment. As she continues her daily battle with pain and uncertainty, her mother's determination offers a glimmer of hope in an otherwise challenging journey toward recovery and relief.
