I was unable to urinate for 14 months due to rare condition

One woman’s normalcy was flushed down the drain after discovering she had a rare condition.

In October 2020, Elle Adams woke up and discovered she couldn’t urinate — no matter how much liquid 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,” Adams, 30, told SWNS. “I was at breaking point — my life had completely changed. I wasn’t able to complete a simple task like go to the toilet.”

Adams went to the emergency room at St. Thomas Hospital in London and was told she had one liter of urine in her bladder.

Usually, the urinary bladder can hold up to 500 ml of urine in women and 700 ml in men, according to the National Institutes of Health (NIH).

Doctors gave Adams an emergency catheter, a tube passed into the bladder to drain urine. She was given the option to take the catheter out and try to go to the bathroom or go home and come back to the hospital for re-evaluation in three weeks.

The content creator from east London made an appointment for eight months later with a urologist and was taught how to self-catheter at home.

Adams went 14 months without being able to relieve herself normally and had no clear reason why, until in December 2021, she was diagnosed with Fowler’s syndrome.

“I was told how I was likely suffering from Fowler’s. I was talked through the treatment options which were minimal — we did try medication but it just made no difference,” she said.

Fowler’s syndrome is the inability to empty the bladder and mainly affects young women, according to the NIH. Its cause is unknown and affects fewer than 1,000 people in the US.

The diagnosis meant that Adams would have to use a catheter in order to urinate for the rest of her life.

She underwent a urodynamics test — a procedure that assesses how well parts of the lower urinary tract work to store and release urine — at Guy’s Hospital in London.

Adams was told her “only option” was to go through Sacral Nerve Stimulation (SNS), which is a treatment that can help with bladder and bowel issues, according to the Bladder & Bowel Community.

The treatment — which would act as a pacemaker for the bladder — delivers stimulation to the nerves through a thin temporary wire inserted near the sacral nerves near the tailbone, which controls the bladder and bowel. It stimulates the bowel muscles to get them to work normally.

“It is not life-changing, but it can help,” Adams shared.

It wasn’t until January 2023 that Adams underwent an operation for SNS.

“I catheterize a lot less, around 50% less. It has made my life easier, after two years of hell it is all I can ask for,” she said. “I am doing well, I am on the more well side of Fowler’s. I am grateful for the difference, I am feeling better than I was.”

She continued, “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.”

“Now I can wee on my own, I have cut down my self-catheterization a lot. It is still difficult, but it is much better than it was.”