I woke up one day unable to urinate – now I need a ‘bladder pacemaker’ at 30 

A 30-year-old woman who woke up one day unable to urinate spoke of her battle with a rare condition that “completely changed” her life.

Elle Adams, from East London, woke up in October 2020 to find she couldn’t urinate no matter how much fluid she drank.

The creator of the content rushed to the emergency room at St. Thomas’ Hospital in London, where doctors discovered she had a liter of urine in her bladder – twice the normal amount.

Doctors fitted her with an emergency catheter, a flexible plastic tube inserted into the bladder to drain urine, which was her only way to urinate.

Finally, in December 2021, she was diagnosed with Fowler syndrome – an inability to urinate normally.

But it wasn’t until January that she got a “pacemaker for the bladder,” which sometimes allows her to urinate normally. However, she is still dependent on a catheter.

In October 2020, Miss Adams was “worried” after discovering that no matter how much she drank, she couldn’t urinate, even though she felt she had to.

She said, “I was extremely healthy. I had no other problems. I woke up one day and couldn’t pee. I was very concerned.’

Emergency room doctors at St. Thomas’ Hospital in London discovered she had a liter of urine in her bladder and placed an emergency catheter.

She was booked for an appointment with a urologist eight months later.

Miss Adams said: ‘I was at a breaking point – my life had changed completely. I couldn’t do a simple task like going to the toilet.’

This doctor thought she was probably suffering from Fowler’s syndrome – a condition thought to affect one in a million women in the UK.

The condition, which mainly affects women in their 20s and 30s, is caused by the bladder’s sphincter muscles not being able to relax.

Difficulty urinating is the main symptom, but most patients can urinate almost normally. Other signs of the disease include back pain, discomfort with urination, and recurrent bladder or kidney infections.

Although Fowler syndrome can occur after surgery or childbirth, doctors don’t yet know what causes the condition.

Following her diagnosis, Ms Adams underwent a urodynamics test – which looks at how well parts of the lower urinary tract work to store and release urine – at Guy’s Hospital in London.

She said, “I was told I was probably suffering from Fowler’s disease.

“I was talked through the treatment options which were minimal – we tried drugs but it just didn’t make a difference.

“The only option for me was to have sacral nerve stimulation, which acts as a pacemaker for the bladder.”

Miss Adams underwent the procedure in January 2023, which is only available to the most severe patients with Fowler syndrome.

It works by delivering gentle electrical impulses through a thin wire placed near the sacral nerve.

It’s similar to a pacemaker, but instead of stimulating a person’s heartbeat, it stimulates a person’s intestinal muscles so that they work normally.

Miss Adams said the procedure wasn’t “life-changing” but it helped.

She said, “I catheterize a lot less, about 50 percent less.

“It has made my life easier, after two years of hell that’s all I could wish for. I’m fine, I’m on the better side of Fowler’s.

“I’m grateful for the difference, I feel better than I was.

“I couldn’t have imagined how I was doing before, it was so draining and taking up my life, it became hard to imagine that would have been the case forever.

“Now I can pee on my own, I’ve reduced my self-catheterization a lot. It’s still hard, but it’s much better than it was.’