Woman who ‘didn’t wee for 14 months’ rushed to A&E after ‘breaking point’

A woman who couldn't wee for 14 months was rushed to hospital after reaching "breaking point" before finally being diagnosed with a rare condition.

Elle Adams, 30, woke up one morning of October 2020 and found she couldn't urinate, no matter how much she drank or felt she needed to go.

She went to A&E where doctors found she had one litre of urine stuck in her bladder – double what the average woman is able to hold – and fitted her with an emergency catheter.

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Elle Adams, a content creator from East London, said: "I was extremely healthy. I had no other problems. I woke up one day and I wasn't able to wee.

"I was very concerned. I was at breaking point – my life had completely changed. I wasn't able to complete a simple task like go to the toilet."

After four hours at St Thomas' Hospital's A&E department, doctors told Elle she could either take the catheter out and try to go to the toilet normally, or go home and return in three weeks.

After several hours of waiting she managed to see a consultant.

She was taught to self-catheterise and sent home, but was still left unable to pass urine without equipment.

Eight months later, Elle returned to a urology centre, where she was told she was likely suffering from Fowler's syndrome, a rare disease affecting mainly young women in their 20s and 30s.

She had a urodynamics test to determine how well her lower urinary tract works and, after 14 months, she was finally diagnosed with the disease in December 2021.

"I was told how I was likely suffering from Fowler's," she said.

"I was talked through the treatment options which were minimal – we did try medication but it just made no difference."

Elle's diagnosis means she will have to use a catheter for the rest of her life, but in January 2023 she had an operation – sacral nerve stimulation, which delivers electrical impulses to stimulate the bowel muscles – that has gone some way to improve her condition.

She said of the operation: "It is not life-changing, but it can help. I catheterise a lot less, around 50% less.

"It has made my life easier, after two years of hell it is all I can ask for.

"I am doing well, I am on the more well side of Fowler's. I am grateful for the difference, I am feeling better than I was.

"I couldn't have imagined how I was going on before, it was so draining, and it took up my life it was becoming hard to imagine that would have been the case forever."

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