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30 year-old from UK unable to pee for 14 months, gets rare disease affecting young women

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A 30-year old woman in the United Kingdom was unable to urinate for more than a year. Despite drinking a lot of liquid, she would not be able to pee, even though she felt like it. Sharing her ordeal, Elle Adams took to social media platform Instagram to say, “I was extremely healthy. I had no other problems. I woke up one day and I wasn’t able to wee.”

Adams goes on to say that she was diagnosed with a rare disease called Fowler Syndrome. 

“I woke up one day and I wasn’t able to wee. I was very concerned”, Adams writes on her Instagram post. “I was at breaking point – my life had completely changed. I wasn’t able to complete a simple task like go to the toilet,” she added.

Adams informs that she was taken to the emergency room at St. Thomas Hospital in London, where after explaining her symptoms, she was informed that she had one litre of urine in her bladder. 

Notably, the urinary bladder can hold up to 500ml of urine in women and 700ml in men!

Adams was given an emergency catheter by the doctors at the St Thomas Hospital. A catheter is a tube passed into the bladder to drain urine. She was advised to either take the catheter out and try to go to the bathroom or go home and come back to the hospital for re-evaluation in three weeks.

Her problems did not go away. Upon visiting urology centre a week later, Adams was then taught how to self-catheter and was sent home. “A doctor that day told me I was just anxious and if I went away and did some yoga and wellness I’d probably be fine,” Adams wrote on Instagram.

The 30-year-old content creator from east London continued to use the device to urinate for more than a year. It was after almost 14 months and many tests later, she was diagnosed with Fowler’s syndrome and was warned she may have to urinate using a catheter for the rest of her life.

Notably, Fowler’s syndrome is the inability to empty the bladder. The rare condition mainly affects young women. Its cause is unknown.

“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,” Adams said.

The content creator was told her only option left was to go through Sacral Nerve Stimulation (SNS) – a treatment that can help with bladder and bowel issues. The procedure, which would act as a pacemaker for the bladder, delivers stimulation to the nerves through a thin temporary wire inserted near the sacral nerves near the tailbone, which controls the bladder and bowel. It stimulates the bowel muscles to get them to work normally.As per the outlet, Ms Adams went ahead with the procedure in January 2023. “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,” she said.

“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-catheterization a lot. It is still difficult, but it is much better than it was,” the 30-year-old continued.

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