'I haven't had a wee for eight years - each day I'm fighting for my life'

Tia Castle hasn't managed to urinate naturally for more than eight years since 2016, and she's now spoken out about her sepsis diagnosis that changed her life forever

A woman has told how she hasn't been able to wee naturally for more than eight years after she was diagnosed with a rare condition.

Tia Castle was rushed to hospital in 2016 when she was suffering from unbearable pain after not being able to go to the toilet for days. Doctors told her sepsis had developed in her urinary tract, due to a shocking two litres of water being retained in her body.

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. She was since diagnosed with Fowler's Syndrome.

Tia, from Glasgow, Scotland said: "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."

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.

While relieved to finally have an answer, 31-year-old 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."

In May 2022 Tia made the brave, life-changing decision to have her bladder removed entirely and have a stoma fitted. 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. 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."