Woman, 27, Hasn’t Peed in 6 Years Due to Rare Disorder: ‘It Was Difficult to Get Doctors to Believe Me’

• Anna Gray went to the hospital numerous times after being unable to urinate by herself, even with laxatives
• She was diagnosed with Fowler’s syndrome, a rare disorder that causes urinary retention in young women
• For the past six years, she’s relied on a catheter to relieve her bladder manually

A young woman has been diagnosed with a rare disorder after spending nearly six years without the ability to urinate.

Anna Gray — a 27-year-old from Bath, England —  first started experiencing symptoms in December 2018 when she woke up one night to go to the bathroom and couldn’t pee.

“The previous day had been completely fine! The first symptom was that I couldn’t wee – no matter how hard I tried and then, despite drinking water regularly, sitting in the bath for prolonged periods of time and listening to the sound of running water, I was unable to go,” she told Metro. “This went on for five days.”

Despite telling her doctors that laxatives weren’t working, Gray said they couldn’t come up with any alternative solutions.

“It was difficult to get doctors to believe me,” she added. “They said that I must have been able to go to the toilet and that I was probably misremembering things.”

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Days later, Gray was struggling to walk due to her bladder pain so she returned to the doctor for answers.

Scans revealed that she had a litre of urine in her bladder, about four times maximum capacity. Doctors inserted a catheter to help relieve herself after the pain felt like she was “being stabbed in the bladder.”

Over the next several months, Gray said she made multiple trips to the hospital to relieve her bladder with a catheter because she remained unable to urinate.

After pushing doctors to run more tests, Gray was eventually diagnosed with Fowler’s syndrome in October 2019.

Fowler’s syndrome is a rare functional disorder where the urethral sphincter — the muscle that controls urine flow — fails to relax when it should. It can cause complete or partial inability to urinate, bladder spasms and pain due to bladder distention. The condition typically affects young women in their 20s and 30s.

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Doctors told Gray that there was no activity in her bladder, and it would likely “never work normally again.”

“I was told there was nothing they could do and I would need a catheter for life,” she told Southwest News Service, via the New York Post. “I think I went through a process of grieving to begin with, because it was so unknown. But it was a relief to know that it wasn’t all in my head.”

With her diagnosis, Gray was taught how to self-catheterize five times a day in order to relieve her bladder manually moving forward. With more research needed surrounding Fowler’s syndrome, she still struggles with infections and the condition ultimately took a significant toll on her mental health.

However, she told the outlet that after six years, she’s learning how to regain her confidence.

“Accepting it was a life-long condition was a lot to get my head around and I was in hospital for my mental health last year,” she said. “But I’m slowly getting there, and now I’m used to the bag. I’ll wear shorts and tops where you can see it – it doesn’t bother me anymore. People ask questions and I’m fine with that.”

Now, Gray finds comfort and support in connecting online with others who live with Fowler’s syndrome.

“At first I thought I must be the only person in the world who was going through something like this, it’s so isolating to be in that position,” she admitted. “But finding a community of people who understand it has been incredible.”