'I haven't gone to the toilet for a wee in eight years – every day's a fight'

Tia Castle, 31, had not been to the toilet in days when her stomach began to uncomfortably swell; unaware of what was going on, she quickly rushed to the hospital

A woman who hasn't been for a pee for eight years says every day is a struggle to survive.

Tia Castle, 31, hadn't been able to use the toilet for several days when she noticed her stomach starting to swell uncomfortably. Soon, the pain escalated to "unbearable" levels and, not knowing what was happening, she rushed to the hospital.

Once there, she was informed that sepsis had developed in her urinary tract due to an alarming two litres of water being retained in her body with no way out.

Facing a high risk of worsening infection, 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 urinate 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. "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."

Tia battled numerous urinary tract and kidney infections, even leading to the removal of her right kidney. She also frequently experienced loss of bladder sensation and "intense" bladder spasms, which impacted her sleep quality.

Tia was on the brink of "losing hope" when a friend suggested a rare condition that matched her symptoms. In 2016, she consulted her doctors, who recommended further urology tests but before her appointment, she was hospitalised with sepsis.

She underwent several surgeries to fit permanent catheters across her body, as her ability to urinate naturally was progressively deteriorating. Being virtually housebound, she pursued an official diagnosis; and in 2017, it was confirmed.

Fowler's Syndrome, discovered only in 1985, hinders urine passage, causing retention and increased infection risk. This is due to the failure of the bladder sphincter muscle to relax and affects two in every one million women, as per Clinisupplies, specialists in bladder and bowel products.

While relieved to finally have a diagnosis, Tia was "devastated" to discover that it was incurable. She expressed: "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 reached her breaking point. Tia courageously chose to have her bladder completely removed and a stoma fitted.

Now, despite battling relentless "out of control" infections and developing resistance to antibiotics, she's been given a "new lease of life".

Currently, she has just begun experimental vaccine trials, while also receiving support from the Fowler's Syndrome UK charity.

For now, though, she's grateful to be alive and sharing her story to raise awareness. 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 off. It's the only reason I'm still alive today."