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Patient stories

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

Alice’s infection started at the age of three after a family swimming trip

Alice’s story is written by her mother.

“A short course of antibiotics cleared the infection only for it to return 48 hours later. Subsequent cultures came back as contaminated samples, mixed growth. These were deemed negative by the GP. She had episodes of frequency – the GP said these things just happened in young children.

Alice was referred to our local hospital where the consultant suggested she had painful bladder syndrome and prescribed cimetidine, an antacid used for heartburn, even though Alice would have a temperature, pain urgency and frequency during these episodes – clear signs of infection. They also found she had a slight voiding problem and was retaining urine after emptying her bladder.

Despite this I knew Alice had an infection. I found a private specialist who cultured her urine for longer in a private lab and an infection was found. By this time Alice had now become symptom free. I believe this was due to a combination of acupuncture, D-mannose powder and following the advice of the urology nurse specialist at our local hospital to increase fluids and regularly empty the bladder.

However, her symptoms returned with a vengeance when she was six. She had pain, urgency, frequency, was unable to sleep at night and attend school. She had faecal incontinence, at her worst was only able to hold 10ml of urine and told me she “wanted to die”.

She had a new consultant at our local hospital who wanted to conduct a cystoscopy and biopsy which I refused, as when suffering from a UTI there is a risk of introducing further infection. They also suggested Oxybutynin (a bladder relaxant) which is contra-indicated with UTI as it causes retention, something Alice already suffered from.

We went back to the private specialist who once again cultured an infection. However despite trying to treat Alice she was unable to control the infection. It had become poly-microbial with multiple antibiotic resistance. The private specialist referred us to the LUTS Clinic where her infection was confirmed when they looked at Alice’s fresh urine under a microscope. She was prescribed appropriate antibiotics based on her symptoms. Miraculously Alice had an improvement within three days. She has now made a complete recovery is symptom free, off antibiotics and leading a normal life.

I believe that if Alice had received the appropriate diagnosis and treatment at the very beginning she would have not have had to endure the pain and suffering she subsequently experienced. She was let down by both the dipsticks and urine cultures which missed her infections.”