Woman, 21, Might Lose Her Bladder After Doctors Continuously Misdiagnosed Her Rare Condition: ‘Things Are Getting Worse and Worse’

A 21-year-old woman in England says she may ultimately lose her bladder after months of severe urinary symptoms were repeatedly misread by doctors before she finally received a diagnosis for a rare condition.

Caris Gibson, from Oxfordshire, told The Independent that her symptoms began in February 2024. She often couldn’t urinate at all, and when she did, she experienced intense pain.

“I was waking up in the morning and I couldn’t go to the toilet because I had, what felt to me like, a UTI,” Gibson told The Independent. She said she would wake up early and sit in the bath trying to urinate because she couldn’t do so normally. As her condition worsened, she said she developed kidney and bladder pain along with persistent urinary retention.

According to Gibson, she was visiting the emergency room nearly weekly from January through March 2024 before her general practitioner referred her to urology. Even then, she said she still wasn’t given a clear explanation for what was happening—and continued returning to the ER as her symptoms persisted.

“They didn’t really know what else they could do other than give me antibiotics, just in case,” she told The Independent.

Over the following months, Gibson said she remained without a firm diagnosis while her condition continued to deteriorate. After one test, she was told her bladder had swollen to almost two and a half times its normal size because of ongoing urine retention. Doctors also told her she typically retained an unusually high amount of urine even after urinating.

Eventually, clinicians taught her how to self-catheterize at home—using a thin tube inserted through the urethra to drain urine from the bladder. But Gibson said she often couldn’t fully insert the catheter due to tightness in her urethra. She tried a longer-term catheter, but said it led to more infections.

“Things were getting worse and worse and worse, and I couldn’t deal,” she told The Independent.

She later opted for a suprapubic catheter, which drains urine through an opening in the abdomen into an external bag. Despite the change, Gibson said she continued experiencing chronic infections.

In November, Gibson received a diagnosis of Fowler’s syndrome—a rare and frequently underdiagnosed condition that causes the urethra to tense and contract, making it difficult or impossible for urine to pass, according to the National Institutes of Health (NIH). The condition is most commonly seen in women in their 20s and 30s.

Gibson told The Independent that while the diagnosis finally gave her an answer, it hasn’t eased the pain or day-to-day disruption.

“I can never wake up in the morning and think, ‘Yeah, I’ll be fine today,’ because by midday, it might all go completely the wrong way, and I’ll be in pain. My kidneys will hurt, and my catheter might stop draining,” she said.

She added that she sometimes has to go to work with a urine collection bag—something she finds especially difficult at her age.

“Some days I have to go to work with a [urine collection] bag, which I absolutely hate doing, because I’m 21 — it’s no life to have a bag attached to you,” she told The Independent.

Gibson also said she has become resistant to several antibiotics after taking so many since her symptoms began nearly two years ago.

Now that she has a formal diagnosis, Gibson is on an NHS waitlist for a specialist consultation. However, she told The Independent she has been informed the appointment may not be scheduled until April or later. Because of the delay, she and her family are trying to fund private consultations and treatment.

In a GoFundMe created by Gibson’s mother, Jill Lumsden, she wrote that a specialized device and procedure could potentially help treat her daughter’s condition, but could cost more than $37,000.

If treatment fails, Lumsden wrote, doctors have advised that Gibson may eventually need her bladder removed and may have to use a urine bag permanently.

“For Caris, the stakes are terrifyingly real,” Lumsden, 53, wrote on the fundraising page. “Without effective treatment, doctors have advised that she could one day face the removal of her bladder entirely. No young person should have to contemplate that future.”