Caris Gibson, 21, suffered with severe symptoms of Fowler’s Syndrome, a rare chronic condition predominantly affecting women in their 20s and 30s, for months before she was finally diagnosed
A woman battling a rare bladder condition that triggers excruciating pain and recurring infections is raising funds for expensive private treatment that could save her from having her bladder surgically removed.
Caris Gibson, from Oxfordshire, has been wrestling with severe Fowler’s Syndrome symptoms since January 2024. What began as painful, troublesome urination that she initially attributed to a urinary tract infection escalated until she completely lost the ability to use the toilet, landing her in A&E on a weekly basis desperately seeking answers.
Her formal diagnosis of Fowler’s Syndrome didn’t arrive until November 2025 – a rare, long-term condition that primarily strikes women in their twenties and thirties, marked by the urethral sphincter’s inability to relax properly.
According to Fowler’s Syndrome UK, the condition triggers urinary retention, considerable discomfort, and infections, and despite catheterisation attempts, Caris has experienced no genuine, enduring relief from her symptoms throughout the two years since they started.
Caris and her mum Jill Lumsden, 53, are now fundraising to cover expensive private healthcare costs after years of waiting on NHS treatment lists, with Jill pledging to run five kilometres daily throughout 2026 to boost awareness of the condition and generate funds for Caris’s care.
“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,” Caris explained to PA Real Life about her initial symptoms. “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.
“It got to the point where I was getting kidney pain, bladder pain, and I couldn’t go to the toilet, and I thought I had a really bad infection. I was in A&E pretty much every week from January to March 2024, before my GP referred me to urology.”
For months following, Caris remained “still in and out of A&E”, yet struggled to obtain the explanations she desperately required.
“They didn’t really know what else they could do other than give me antibiotics, just in case,” she said.
Following months of delays for an NHS urology appointment, Caris decided to fund a private consultation to shed light on what might be triggering her crippling symptoms.
She discovered that due to the persistent urine retention, her bladder had expanded to hold 1.2 litres – whilst a normal bladder usually contains approximately 500ml of urine, according to the NHS – and each time she visited the toilet, unable to completely drain her bladder, roughly 600ml of urine stayed behind.
According to Fowler’s Syndrome UK, the inability to fully drain the bladder places Fowler’s sufferers at heightened risk of infection, which can trigger back, kidney and suprapubic (lower abdominal) discomfort, alongside fever and blood in the urine. In serious instances, such infections can result in sepsis, a potentially fatal medical crisis.
To offer relief, Caris was instructed in self-catheterisation, involving the insertion of a slender tube into her bladder via her urethra to empty the urine.
However, she soon discovered it became progressively harder to position the catheter properly due to her urethral sphincter’s tightness, preventing full insertion and proper drainage. She also began experiencing bleeding from her urethra.
At this point, Caris contacted NHS 111 and arrangements were made for a permanent catheter to be fitted, which remains in position to continuously empty urine into a collection bag. Unfortunately, the permanent catheter caused excruciating discomfort and additional infections, requiring more frequent replacements than usual.
In September 2024, nine months after initially seeking medical help for her symptoms, she was finally seen by a specialist NHS urologist who arranged a urodynamics test, which assesses how effectively the bladder, sphincters and urethra store and release urine.
“The consultant I saw there was more specialist, and at the first appointment I had, she mentioned Fowler’s Syndrome, but didn’t really say too much about it,” Caris recalled.
“But things were getting worse and worse and worse, and I couldn’t deal with the indwelling catheter anymore. I couldn’t do self-catheterisation because I couldn’t get it in, and it clamped.
“So she came to the decision to put in a suprapubic catheter, which goes straight through my tummy, which I had done in June 2025, and I’ve had that since then. To be honest, it hasn’t really done anything but give me more problems.”
Due to the ongoing infections, Caris has developed resistance to multiple antibiotics. “My bladder still hurts, my kidneys still hurt, my urethra hurts,” she explained.
“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, but I couldn’t go, or I didn’t actually need the toilet.
“Some days I have to go to work with a (urine collection) bag on which I absolutely hate doing, because I’m 21 – it’s no life to have a bag attached to you.”
Caris can choose between a urine collection bag or a flip-flow release valve with her suprapubic catheter, and whilst the bag typically provides some comfort during her worst episodes, occasionally she experiences no relief from the agony whatsoever.
“It really depends on the day. It’s really random,” she explained.
“I 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, and I’ll be in pain. My kidneys will hurt, and my catheter might stop draining.”
Eventually, in November 2025, Caris received a formal diagnosis of Fowler’s Syndrome. She continues to wait for NHS treatment, having been on the list since April 2025, but was informed she’s unlikely to hear about an initial consultation until April 2026.
Feeling desperate and unable to cope with the crippling pain any longer – plus the toll it’s taking on her mental health – she and her parents are seeking private healthcare, facing eye-watering costs.
“I don’t want to see her have to deal with her mental health as well as her physical health…” her mum, Jill, explained. “It’s just heartbreaking.”
Jill has launched a GoFundMe campaign with a £7,000 target, though she acknowledged the treatment will exceed this amount.
Following an initial private consultation, a urologist informed Caris she could try a sacral nerve stimulator (SNS) – a gadget that delivers gentle electrical pulses to nerves in the lower back, potentially helping to restore bladder control.
There’s no certainty this approach will be effective, however.
“If it works, then that’s fantastic. We are obviously trying to generate positive manifestation that it is going to be successful,” Jill explained.
“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. We don’t want to say it out loud.”
If the SNS doesn’t work, it’s likely that Caris will have to undergo a procedure to remove her bladder and fit a permanent urostomy bag, which will collect the urine that would normally go into the bladder.
To raise funds for Caris’s treatment and increase awareness of this lesser-known condition, Jill has committed to running five kilometres every day in 2026.
The fundraising total currently stands at nearly £2,400. To contribute to the fundraiser, click here.
For the latest breaking news and stories from across the globe from the Daily Star, sign up for our newsletters.