Woman woke up with rare condition that left her unable to wee for a year

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 at St Thomas’ Hospital, London, and after explaining her symptoms, where doctors discovered Elle had one litre of urine in her bladder.

For context, 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 – but her problems weren’t instantly fixed.

After visiting the urology centre a week later, Elle was taught how to self-catheter and was sent home. She continued to use the device to wee for more than a year.

Finally, 14 months and many tests later, Elle was diagnosed with Fowler’s syndrome – an inability to pass water normally – in December 2021, and was warned she may have to urinate using a catheter for the rest of her life.

Elle Adams, 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.’

Elle tried medication too, but it made no difference, and her only option left was to have sacral nerve stimulation, which acts as a pacemaker for the bladder.

Similar to how a pacemaker stimulates the heartbeat, sacral nerve stimulation stimulates someone’s bowel muscles, so they work normally.

The procedure delivers gentle electrical impulses through a probe – a thin wire – that is placed near the sacral nerve.

In January 2023, she went ahead with the procedure.

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.’

Grateful for the difference it’s made, she is feeling better for it.

‘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,’ she said.

‘Now I can wee on my own – it is still difficult, but much better than it was.’

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