A woman is sharing her harrowing ordeal after being diagnosed with a rare condition that has left her unable to wee naturally for eight years.
Tia Castle, 31, hadn’t been to the toilet in days when her stomach began to uncomfortably swell.
Quickly, the pain became “unbearable” and unaware of what was going on, she rushed to the hospital.
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While there, she was told sepsis had developed in her urinary tract due to a shocking two litres of water being retained in her body – with no release.
With a high risk of infection worsening, the former care home worker had to manually make herself go to the toilet each day for the next nine months using a catheter.
Since then, she’s been diagnosed with a rare condition known as Fowler’s Syndrome – and hasn’t been able to wee naturally for eight years.
“I was in complete agonising pain, but no matter how hard I tried, I just couldn’t go to the toilet,” Tia, from Glasgow, Scotland, told Need To Know.
“I drank so much water to try and force my body to release some of the retention – but this only kept building up.
“In the last eight years, I haven’t passed a drop of urine naturally.
“And it’s left me devastated and feeling fed up to know my life is on the line regularly because of this.
“Had I not gone to the hospital when I did, who knows if I would still be here today?
“It’s all come as a real shock, as I never have the urge to go to the toilet, yet my stomach bulges like it’s about to burst.
“I have missed out on so much and had everything I once knew taken away from me.
“There’s still so much I want to do in life, but right now, that seems impossible.”
Growing up, Tia had dealt with several urinary tract and kidney infections, where even her right kidney had to be removed.
She also suffered frequently with loss of bladder sensation and “intense” bladder spams, with her sleep quality affected as a result.
Tia was “losing hope” until a friend mentioned about the aforementioned rare condition, noting that her symptoms were signs of it.
In 2016, she visited her doctors, who referred her to urology for further testing – but before her appointment, she was admitted to hospital with sepsis.
She then had to undergo numerous surgeries in order to be fitted with permanent catheters across her body, as her ability to wee manually was getting harder to do.
Left practically housebound, she sought out an official diagnosis; and in 2017, this was confirmed.
Fowler’s Syndrome, which was only discovered in 1985, makes it difficult to pass urine, leading to retention and increased risk of infection.
It’s as a result of the bladder sphincter muscle’s failure to relax and affects two in every one million women, according to Clinisupplies, who specialise in bladder and bowel products.
While relieved to finally have an answer, Tia was “devastated” to learn that it was incurable.
She said: “I was so scared, as I didn’t know what was next for me – and if I’d ever get help.
“Doctors tried various treatments, including wires inserted into the base of my spine to stimulate the nerves in my bladder.
“I was even offered surgery to remove part of my bladder, so that a new path would be created for the urine to flow.
“But sadly, nothing worked.
“Each day was filled with a constant dread of the excruciating pain washing over me.
“My whole life was put on hold, as I was left bed bound and still with chronic infections.
“As I was so young, and my condition is so rare, I felt isolated, because there was no one to turn to.”
Then, in May 2022, she decided enough was enough.
Tia made the brave, life-changing decision to have her bladder removed entirely and have a stoma fitted.
Now, although she’s still struggling with constant “out of control” infections – and is developing resistance to antibiotics, making them harder to treat – it’s granted her a “new lease of life”.
Currently, there are experimental vaccine trials available, which she has just started, alongside receiving support from the Fowler’s Syndrome UK charity.
For now, though, she’s thankful to be alive and sharing her story to warn others.
She added: “I’m unable to enjoy life, as most of it has been spent fighting for it.
“I just wish I was well enough to leave the house.
“Right now, I am very stressed, pretty poorly, doing my best to stay out of hospital – and bored out of my mind, as I’ve been stuck on bed rest.
“But I’m hopeful these experimental vaccines will work, as this is my last option.
“Now, I want to get some items on my bucket list ticked off while I’m still able to do so.
“Even though I have no bladder and one kidney with dropping function, I am so desperate [to make memories].
“I want to tell my story, so anyone else with Fowler’s Syndrome knows they are not alone.
“There are so many [people] out there struggling, so if I can help one person, I’ll be happy.
“And for those with stoma; remember, there’s nothing to be ashamed of.
“It’s the only reason I’m still alive today.”
