Woman who couldn't pee for over a year makes surprising revelation

The 'extremely healthy' 30-year-old said the 'simple task of going to the toilet' has turned her life upside down.

A woman who woke up one morning unable to urinate has shed light on the rare disorder that changed her life “overnight” and left her running for the loo up to 40 times a day.

Elle Adams, a podcast co-host and content creator in London, said she was living a “dream life” until the morning of October 2, 2020, when she suddenly lost the ability to wee, no matter how much she drank.

“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,” she told local publications this week.

Elle Adams in hospital and on the toilet trying to pee.
Elle Adams woke up on the morning of October 2, 2020, to discover she was unable to pee. Source: Elle Adams/Instagram

The 30-year-old, who shares her health journey with her 117,000 Instagram followers, said she then went to the hospital, where doctors drained one litre of fluid from her bladder and inserted an indwelling catheter — which remains in place — before sending her home.

“I remember so vividly the doctor saying ‘we can remove the catheter and see if you can go, which we don’t think you’ll be able to. Or you can go home with it in and go to outpatients urology in a couple of weeks’,” she wrote on the social media platform. “It was in the middle of the pandemic and I was all alone.”

Frustrated when she was still unable to urinate a week later, Ms Adams “walked into [an] urology clinic desperate for help”. “They taught me to self-catheterise and told me to learn to live with it,” she said. “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.”

Elle Adams in a pink dress and at dinner.
The 30-year-old had one litre of fluid drained from her bladder at the hospital. Source: Elle Adams/Instagram

Woman needs to wee '35-40 times a day'

Over the following 14 months, the 30-year-old was unable to wee normally and relied on self-catheterisation, which she struggled with, MyLondon reports.

Ms Adams has revealed that she has since been diagnosed with Fowler’s Syndrome — a rare disorder in which young women find it difficult to pass urine due to the bladder's sphincter muscle's failure to relax, causing urinary retention, according to Bladder Health UK.

A bladder can hold 400ml to 600ml of fluid, but the sensation of needing to empty will occur at 200-300ml, the Continence Foundation of Australia says.

“I have Fowler’s and I also have an overactive bladder,” Ms Adams said in a video reel. “On a day-to-day basis what that means for me is that I wee 30-35 times a day, and some of those times I can’t go because my sphincter doesn’t open properly so I have to self catheterise myself — unless you follow me into a toilet you would not know there was anything wrong.”

Ms Adams in hospital after surgery and at the beach.
Ms Adams has been diagnosed with Fowler's Syndrome and recently underwent surgery. Source: Elle Adams/Instagram

Woman has pacemaker implanted

After trying medication, physiotherapy and acupuncture to improve her urination and “quite a lot of pain and discomfort”, Ms Adams underwent a Sacral Nerve Stimulation (SNS) operation, which she described as a pacemaker for the bladder, in January.

Although she only saw a 20 per cent improvement during the trial — far less than the recommended 50 per cent — the Fowler’s Syndrome Ambassador said her surgeon decided to implant the battery permanently because they had “exhausted every other option”.

“Since the permanent device was inserted, I’ve had a really good output from it,” Ms Adams said on Wednesday. “My Symptoms have improved about 50 per cent, which I’m so over the moon about.”

“As warned about by my surgeon, it’s not a perfect treatment, there can be rough side effects. I now have sciatica in my left leg and fibrosis/scar tissue at the site causing some problems…but I’ll take them all in return for not weeing 40 times a day.”

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