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Patient stories

Men, women and children get UTIs. Sufferers of chronic UTI share their stories

Gemma, an animal welfare worker and carer, has suffered repeated UTIs from childhood

“I developed a chronic UTI as a result of recurrent childhood urinary infections which were repeatedly misdiagnosed and left untreated, resulting in severe bladder and kidney symptoms which left me with a diagnosis of interstitial cystitis.

My earliest memories of bladder symptoms date back to when I was four years old. As a child, I received a misdiagnosis of overactive bladder syndrome following several urine cultures showing mixed growth of doubtful significance. As a result, my doctor suggested that I should be denied access to a toilet for long periods while at school in order to “train” my bladder.

The incredible pain, embarrassment, deterioration and fear that I suffered meant that I became too terrified to attend school and missed a significant amount of my primary education.

Despite numerous short courses of antibiotics, antidepressants and bladder relaxants throughout my childhood, my symptoms continued to worsen to the point where I started to experience severe and life limiting symptoms, with debilitating pain, retention, voiding problems, urgency, frequency, urinary incontinence and crippling fatigue.

Due to increasingly worsening symptoms, I underwent two urodynamic studies, three KUB ultrasounds and two rigid cystoscopies under anaesthetic. I also underwent a ureteroscopy, retrograde study, urethral dilation, dilation of both ureters and bladder distension.

Unfortunately, these investigations came at a massive cost to my health and I was hospitalised on multiple occasions with severe uncontrollable pain, vomiting, septicaemia, kidney infections, urinary retention and passing frank blood clots that were so thick that I was unable to pass urine. Each time I was admitted to hospital and given IV antibiotics, my symptoms would improve dramatically, only to relapse as soon as the course had finished.

To say that I was made to feel less than human is an understatement. Despite seeing five urologists at several different hospitals and multiple doctors, nurses and incontinence specialists, I was offered no answers or solutions to my problems. I felt completely hopeless, abandoned and isolated, despite being surrounded by medical staff who were supposed to have my best interests at heart.

Within a few weeks of starting antibiotic treatment with at the LUTS clinic at the Whittington Hospital, my symptoms had started to improve and my awful kidney pain subsided significantly. My symptoms have continued to improve throughout my treatment and I have now improved to such an extent that I am able to lead a relatively normal life.”