A young woman from Oxfordshire faces the devastating prospect of having her bladder removed after battling a rare and debilitating urinary condition for years, with private treatment representing her only hope to avoid this life-altering surgery.
Years of Misdiagnosis and Pain
Caris Gibson, aged 21, has been suffering from severe symptoms of Fowler's Syndrome since February 2024. This rare chronic condition, which predominantly affects women in their 20s and 30s, involves the failure of the urethral sphincter to relax properly, leading to painful urinary retention.
For months, Caris dismissed her symptoms as recurrent urinary tract infections, enduring what she described as "kidney pain, bladder pain" and an inability to urinate properly. "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 recalled of her early experiences.
The Struggle for Diagnosis
Caris's journey to diagnosis was fraught with challenges. She found herself in A&E "pretty much every week from January to March 2024" before her GP finally referred her to urology specialists. Even then, answers remained elusive for many months.
"They didn't really know what else they could do other than give me antibiotics, just in case," Caris explained of her early medical encounters. After months of waiting for an NHS urology consultation, she resorted to paying for private healthcare to investigate her worsening symptoms.
A Shocking Discovery
The private consultation revealed the extent of damage caused by her condition. Due to constant urine retention, Caris's bladder had swollen to a capacity of 1.2 litres - more than double the healthy bladder capacity of around 500ml. Even when attempting to urinate, approximately 600ml of urine remained trapped in her bladder.
According to Fowler's Syndrome UK, this failure to completely empty the bladder puts patients at significantly greater risk of infection, which can cause back pain, kidney pain, lower abdominal pain, fever, and blood in urine. In severe cases, such infections can escalate to sepsis, a potentially life-threatening medical emergency.
Failed Treatment Attempts
Medical professionals initially taught Caris to conduct self-catheterisation, inserting a thin tube through her urethra to drain urine from her bladder. However, she soon found this increasingly difficult due to the tension in her urethral sphincter, leading to improper drainage and urethral bleeding.
Subsequent attempts with an indwelling catheter - designed to stay in place and continuously drain urine - caused unbearable pain and more infections. In June 2025, she received a suprapubic catheter inserted directly through her abdomen, but this too has provided little relief while creating additional complications.
The Formal Diagnosis and Treatment Race
Caris finally received a formal diagnosis of Fowler's Syndrome in November 2025, nearly two years after her symptoms began. She remains on an NHS waiting list for treatment, having been told she's unlikely to receive an initial consultation until April 2026 at the earliest.
"My bladder still hurts, my kidneys still hurt, my urethra hurts," Caris described of her daily experience. "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."
The Impact on Daily Life
The condition has profoundly affected Caris's quality of life. "Some days I have to go to work with a (urine collection) bag, which I absolutely hate doing, because I'm 21 - it's no life to have a bag attached to you," she explained.
The continual infections have made Caris resistant to several types of antibiotics, further complicating her treatment options. The uncertainty of her condition means she can "never wake up in the morning and think: 'Yeah, I'll be fine today', because by midday, it might all go completely the wrong way."
A Mother's Determination
Caris's mother, Jill Lumsden, 53, has launched a fundraising campaign to help pay for private treatment after years on NHS waiting lists. "I don't want to see her have to deal with her mental health as well as her physical health... It's just heartbreaking," Jill said of her daughter's situation.
Jill has vowed to run five kilometres every day throughout 2026 to raise both awareness of Fowler's Syndrome and funds for Caris's treatment. "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," she explained of her motivation.
The Private Treatment Option
After a private consultation, Caris learned she could try a sacral nerve stimulator (SNS) - a device that sends mild electrical impulses to nerves in the lower back to improve bladder function control. However, there's no guarantee this treatment will work, and the costs are prohibitive without fundraising support.
"If it works, then that's fantastic. We are obviously trying to generate positive manifestations that it is going to be successful," Jill said. "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 Stakes of Treatment Failure
Should the SNS treatment prove unsuccessful, the only remaining course of action would be surgical removal of Caris's bladder and the fitting of a permanent urostomy bag. This would represent a life-altering procedure for the 21-year-old.
The fundraising target has been set at £7,000, though Jill acknowledges the treatment will likely cost more than this amount. The campaign has currently raised almost £2,400, representing a significant step but still falling short of what's needed to access potentially bladder-saving treatment.
Caris's story highlights both the challenges of living with rare medical conditions and the difficult choices facing patients when NHS waiting times stretch into years while symptoms worsen daily.
