Caris Gibson, a 21-year-old from Oxfordshire, is fighting for her health as she grapples with Fowler’s Syndrome, a rare urinary retention condition that has left her in crippling pain and on the brink of losing her bladder. Diagnosed only in November 2025 after a lengthy struggle and numerous A&E visits, Caris now faces the daunting prospect of expensive private treatment to avoid drastic surgical intervention.
A Long Road to Diagnosis
Since early 2024, Caris has endured severe symptoms that she initially attributed to a urinary tract infection. “I would wake up unable to go to the bathroom, thinking it was just a UTI,” Caris explained. “I spent countless mornings sitting in the bath, desperate for relief.”
Her ordeal saw her visiting A&E almost weekly, yet answers remained elusive. It wasn’t until she received a private consultation in 2025 that the dire nature of her condition became clear. By then, her bladder had expanded to a dangerous 1.2 litres—far exceeding the normal capacity of 500 ml—leaving her at high risk for infections.
The Impact of Fowler’s Syndrome
Fowler’s Syndrome, which primarily affects women in their 20s and 30s, is characterised by the inability to empty the bladder fully due to a malfunctioning urethral sphincter. This condition not only causes significant physical pain but also leads to frequent infections and debilitating complications. “I continue to face kidney and bladder pain, and the mental toll is just as severe,” Caris lamented.
Her treatment journey has been fraught with frustration. After struggling with self-catheterisation and enduring the discomfort of an indwelling catheter, a suprapubic catheter was placed in mid-2025. However, this has not provided the relief she desperately needed.
Fundraising for a Future
With NHS treatment still out of reach, Caris and her mother, Jill Lumsden, have launched a fundraising campaign to cover the costs of private care. Jill has committed to running 5 km every day in 2026 to raise both awareness for Fowler’s Syndrome and funds for her daughter’s treatment. “Five kilometres is a small fraction of what Caris endures daily. I want to shine a light on her struggle,” Jill stated.
The fundraising efforts have garnered nearly £2,400 so far, yet the total needed is well beyond that amount. The family hopes to reach £7,000 to cover initial consultations and potential treatments, including a sacral nerve stimulator, which may help restore bladder function.
A Future at Stake
Caris’s future hinges on the success of her fundraising efforts and subsequent treatments. If the sacral nerve stimulator does not yield positive results, the alternative could mean surgery to remove her bladder entirely, leading to a life with a permanent urostomy bag. “We’re trying to stay hopeful, but the reality of what could happen is terrifying,” Jill shared.
As they navigate these turbulent waters, the family remains resolute in their mission to raise awareness about Fowler’s Syndrome and the urgent need for improved access to treatment options, especially for those affected by this debilitating condition.
Why it Matters
Caris Gibson’s story highlights a significant issue within the healthcare system: the challenges faced by individuals with rare conditions in obtaining timely diagnoses and effective treatments. Her struggle is emblematic of the broader fight for recognition and resources for those suffering in silence. By raising awareness, Caris and Jill not only advocate for better healthcare access but also inspire others facing health crises to seek help and support. The outcome of their journey could reverberate beyond their lives, potentially influencing policy changes and fostering greater understanding of rare medical conditions within the medical community.
