Gen Z Woman Wakes Up Terrified After Vital Organ Shuts Down Overnight
Newsweek AI is in beta. Translations may contain inaccuracies—please refer to the original content.
A woman who spent years searching for answers has opened up about the rare condition that caused her bladder to stop working overnight.
Ever since she can remember, Remy-Jade Rider has experienced frequent urinary tract infections (UTIs). She told Newsweek that they started when she was only 3 years old and they occurred monthly. By the time she reached 15, they started "getting more painful" and increased in frequency.
Rider, of Essex, in the U.K., was often told by doctors that they didn't know what was wrong and nothing further could be done. She thought she would have to make peace with the lack of answers, but, in November 2022, everything changed.
"I was in hospital being treated for a kidney infection from a UTI, and I woke up in the morning to discover I could not wee," Rider said. "I was really scared as I was trying to wee, but nothing came out."
When a nurse asked Rider how long it had been since emptying her bladder, she couldn't even remember. It was likely over 24 hours, and a scan showed that it was retaining around 1.8 liters.
Remy-Jade Rider talks about her condition while applying makeup.
Remy-Jade Rider talks about her condition while applying makeup.
@remyjadex / TikTok
It felt like there was "a blockage," and no matter how hard Rider tried, nothing happened. She was kept in hospital for over a week and sent home with a catheter because she was still unable to empty her bladder.
"They kept taking it out to see if I could wee, but it was always unsuccessful so they would insert another one," Rider continued.
Rider was transferred to the urology department where she underwent a urodynamics test (observing how well the bladder stores and releases urine), a flexible cystoscopy (inserting a camera to check for abnormalities), a CT scan, pelvic neurophysiology, and a urethral pressure profile.
Test after test came back clear, and the search for a diagnosis went on. During that time, Rider was in and out of hospital with UTIs that got progressively worse.
Finally Getting a Diagnosis
In April 2023, Rider was transferred to a larger hospital in London. It was there that she was asked if she had ever heard of Fowler's Syndrome, as she showed all the signs for it.
Fowler's Syndrome is a rare cause of chronic urinary retention among young women. It was first described in 1985, caused by the sphincter's failure to relax and allow urine to pass, according to the Bladder and Bowel Community.
Women with the condition don't experience the normal sensation of urinary urgency that comes with a full bladder. It is not known why Fowler's Syndrome occurs, but board-certified urologist Dr. Scott D. Miller told Newsweek that it is like a "physiological traffic jam" where signals sent between the brain and bladder aren't connecting.
"The bladder muscle, which normally contracts to push urine out, stays inactive. At the same time, the sphincter muscle at the bladder opening may paradoxically remain tight—like a gate that won't open, even when pressure builds," said Miller, medical director of Wellstar Urology.
It can be a devastating condition and, just like Rider, women are often dismissed or told it is a psychological problem. But Miller said that Fowler's Syndrome "deserves real attention," and diagnosis requires a high index of suspicion.
"The psychological toll of long-term catheterization, infections, or being dismissed can be profound. Fowler's Syndrome isn't just a bladder problem—it's a diagnostic blind spot. But, with growing awareness and modern treatments, we're now seeing women get their lives back," Miller said.
Rider was diagnosed with Fowler's Syndrome in July 2023, which was a long time coming. Part of her was glad to have a diagnosis, but it was also a realization that this would be something she was "going to have for life."
Rider had a suprapubic catheter fitted, going directly into her bladder below the navel. As there is nothing going into her urethra, it means Rider could still wee naturally if she is able.
This gave her some quality of life again, but, by late 2024, doctors were still looking at long-term options and suggested a sacral nerve stimulator. The concept is "similar to a pacemaker," whereby electrical impulses are sent to the nerves controlling bladder function.
Rider told Newsweek: "The first surgery is the trial phase where they place the lead into the sacral nerve with a wire coming out of your back. You wear a belt around your waist, the lead goes into a battery device, and the belt holds this device in a pocket.
"The trial lasts around four weeks, and you wait to see if you can wee without a catheter. As I was able to wee, we went ahead with the second surgery."
However, by the time Rider awoke from the second surgery, once again she found herself unable to wee. Her doctors are still trying to figure out why.
The Online Response
Throughout her experience, Rider often felt alone and like she couldn't tell people what she was going through. It is always going to be part of her, so it felt important to share details of her journey on TikTok (@remyjadex).
To her surprise, the video documenting her diagnosis went viral with almost 100,000 views and over 4,000 likes at the time of writing. Rider said she hopes that speaking openly about Fowler's Syndrome will raise awareness and inspire other women to advocate for themselves.
She said: "I wanted others to know they're not alone and to educate girls whose doctors say they don't know what's wrong. I was really nervous about posting it; however, I got so many messages from girls thanking me.
"It's also amazing to know I'm not alone. It makes it that little bit less scary to hear positive stories about how people live their life the best they can with this horrible illness," Rider added.
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