A 30-year-old woman in the U.K., who was unable to urinate normally for more than a year, has revealed her ordeal on social media, saying it took her 14 months to get a diagnosis about her rare condition.
The condition that affected Elle Adams from east London left her unable to pee even though she drank a lot of fluids and felt the urge to urinate.
“I was extremely healthy. I had no other problems. I woke up one day and I wasn’t able to pee,” Adams said on her page. “I was very concerned. I was at a breaking point – my life had completely changed. I wasn’t able to complete a simple task like going to the toilet,” she added.
Although the doctors could not initially diagnose her condition, almost 14 months later, she was told she had Fowler’s syndrome. The doctors also warned her the rare condition might require her to use a catheter for the rest of her life.
“I am one of the thousands of women whose lives have been torn apart by Fowlers Syndrome,” Adams said, adding that many people are still unaware of the condition.
What is Fowler’s Syndrome?
Fowler’s Syndrome affects young women between 20 and 30 years of age. The condition usually presents itself with no other symptoms except the inability to empty the bladder. However, some women might experience back pain, suprapubic pain, and discomfort due to urinary infections.
It is caused when the external urethral sphincter fails to relax, allowing urine to be passed normally.
The urethral sphincter is a muscular structure that regulates the outflow of urine from the bladder into the urethra. While the internal urethral sphincter controls the involuntary urine flow from the bladder to the urethra, and the external urethral sphincter regulates the voluntary control of urine from the bladder to the urethra.
The rare condition is estimated to be present in 0.2 cases in 100,000 people per year.
Although the exact cause of sphincter failure is unknown, it is usually seen in women spontaneously or after a surgical procedure, childbirth, opiate use, or other medical condition.
The severity of the condition varies in each patient. Some patients might be able to pass urine with difficulty, while retaining significant amounts, while others suffer complete retention. Those who do not have complete retention may notice recurrent bladder infections or even kidney infections.
What are the treatment options?
The treatment options are based on the severity of the condition and the residual volume of urine left after urination. No intervention is necessary for patients who have very low levels of residual volumes, while, those with high residual volumes need regular intermittent catheterization.
In severe cases, patients who have complete retention might need Sacral Nerve Stimulation (SNS) therapy, which involves providing gentle electrical impulses through a probe that is placed near the sacral nerve.
“It is not life-changing, but it can help. 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,” Adams, who underwent the therapy in January 2023 said.