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What is Fowler's Syndrome? UK Woman Diagnosed With Rare Condition Unable To Urinate

Adams' diagnosis meant that she would have to urinate through a catheter for the rest of her life.

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Elle Adams, a content creator based in Bow in East London, was unable to urinate one morning in October 2020. The 30-year-old could not urinate no matter how much liquid she drank, even though she needed to.
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Adams was understandably anxious and went to Accident and Emergency at St Thomas' Hospital in London. Doctors revealed Adams had one litre of pee in her bladder after she explained her strange symptoms. Women's bladders can typically store 500ml, whereas men's bladders can typically hold 700ml.

Adams was given an emergency catheter, which is a tube that is inserted into the bladder to empty pee. She was offered the option of removing the catheter and attempting to use the lavatory, or going home and returning to the hospital in three weeks for re-evaluation.

The east London content writer scheduled an appointment with a urologist eight months later and was taught how to self-catheter at home.

Adams was ultimately diagnosed with Fowler's Syndrome - an inability to pass water regularly - in December 2021, after 14 months of being unable to urinate normally and several tests. Here's all you need to know about Fowler's Syndrome.

What Is Fowler's Syndrome?

  • Fowler's Syndrome, which was originally identified in 1985, is a cause of urinary retention (inability to pass water freely) in young women.
  • Urinary retention in young women is uncommon, but it can be quite painful. The problem is in the urethral sphincter. The issue is caused by the sphincter's inability to relax and allow urine to flow properly. The syndrome is not related to any neurological problem.
  • Adams' Fowler's Syndrome diagnosis meant that she would have to urinate through a catheter for the rest of her life.
  • At Guy's Hospital in London, she performed a urodynamics test, which evaluates how effectively portions of the lower urinary system operate to hold and discharge urine.
  • According to the Bladder & Bowel Community, Adams was advised her ‘sole choice’ was to undergo Sacral Nerve Stimulation (SNS), a therapy that can aid with bladder and bowel difficulties.
  • The procedure, which acts as a pacemaker for the bladder, stimulates the nerves through a small temporary wire put near the sacral nerves at the tailbone, which controls the bladder and intestine. It activates the gut muscles, causing them to function appropriately.
  • ‘It won't revolutionise your life, but it could help,’ Adams stated on Instagram.
  • Adams did not have surgery for SNS until January 2023.
  • "I catheterise much less, around 50 percent less. That has made my life simpler, which is all I can ask for after two years of suffering," she remarked.
  • Adams added that looking back, it was hard to understand how she dealt with the issue. "it was so exhausting and took up so much of my life that it was difficult to imagine it would have been the case forever" she said.
  • Adams said that she was able to urinate on her own and had drastically reduced her self-catheterisation. She added that it was still difficult but it was better than it used to be.

Suggested reading: Mom Of 2, TikTok Celebrity Jehane Thomas Dies At 30 Following Series Of Migraines

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