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Manchester Evening News
Manchester Evening News
Health
Ben Barry & Ellie Kemp

Woman unable to wee for more than a year diagnosed with rare condition that 'changed her life'

A woman was unable to wee for more than a year before being diagnosed with a rare condition which she says "completely changed" her life.

Elle Adams, 30, woke up in October 2020, unable to urinate. No matter how much fluid she drank, she was unable to wee even though she felt like she needed to. She went to A&E and after explaining her symptoms, doctors discovered Elle had one litre of urine in her bladder.

Women's bladders are usually able to hold up to 500ml and men's are usually able to hold 700ml. Doctors fitted her with an emergency catheter - a tube that's passed into the bladder to drain urine.

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After visiting the urology centre a week later, Elle was taught how to self-catheter and was sent home. And after 14 months unable to wee normally, Elle was finally diagnosed with Fowler's syndrome - an inability to pass water normally - in December 2021.

It meant she would have to urinate using a catheter for the rest of her life. Elle, a content creator, from Bow, 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."

Elle was fitted with a catheter in hospital (Elle Adams / SWNS)

Elle was "worried" when she woke up unable to wee. Concerned, she took herself to St Thomas' Hospital, London, where she was told her bladder had a litre of urine - so doctors performed an emergency catheter. After four hours in A&E, doctors gave Elle the option to take the catheter out and try to go to the toilet or go home and return to the hospital in three weeks.

After waiting for a few hours Elle managed to see a consultant. Eight months later, Elle went to a urology centre and was told that she was likely suffering from Fowler's syndrome. She underwent a urodynamics test - a procedure that looks at how well parts of the lower urinary tract work to store and release urine - at Guy's Hospital, London.

Elle said: "I was told how I was likely suffering from Fowler's. I was talked through the treatment options which were minimal - we did try medication but it just made no difference. I only option for me was to undergo sacral nerve stimulation which acts as a pacemaker for the bladder.

Sacral nerve stimulation delivers gentle electrical impulses through a probe - a thin wire - that is placed near the sacral nerve. Similar to a pacemaker but instead of stimulating someone's heartbeat it stimulates someone's bowel muscles, so they work normally.

Elle underwent surgery in January 2023 (Elle Adams / SWNS)

Elle underwent an operation in January 2023, to have it done. Elle said: "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.

"Now I can wee on my own, I have cut down my self-catheterisation a lot. It is still difficult, but it is much better than it was."

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