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Patient stories

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

Lily suffered her first UTI at the age of two

Lily’s story is written by her mother.

“By the age of four she was having regular, acute infections. A 14-month period saw her prescribed antibiotics 10 times. These bouts, which were accompanied by fever, vomiting, severe stomach pains, pain on passing urine and extreme tiredness, made my bright, happy daughter very anxious and she became very reluctant to leave me and go back to school.

When she was five, Lily had DMSA and renal ultrasound scans that showed that everything was anatomically normal and she was discharged. A year later I asked for her to be referred to a paediatrician as the infections were continuing but nothing was resolved. A consultant told me “she is just one of those children that get infections”. We had a year free of acute infections when Lily was seven, thanks to D-mannose, but her energy levels were still extremely low and she would often complain of a stomach ache.

In January 2016, aged nine, the infections came back with a vengeance. High fevers, vomiting, agonising stomach and flank pain and pain on urinating continued over several weeks and left her bed-ridden. The symptoms kept returning a few days after finishing antibiotics.

Over four months she had six courses of antibiotics – one intravenous and two lasting 14 days – and three trips to A&E with acute symptoms. Her school attendance went down to 60 per cent.

A month later Lily’s symptoms changed – she still had constant pain in her stomach area, pain on passing urine and was extremely tired but didn’t have a fever. I remember the day clearly as she slept almost all day.

Two meetings with consultants at a urology clinic and one urgent appointment with a paediatrician left us no closer to curing the infection that was obviously still present – in fact no one believed that she had an infection.

One urologist stated that dysfunctional voiding was the cause of her symptoms, however our efforts to address this over the previous three years had yielded no improvement. The paediatrician we saw declared that the urine test results showed that there was no infection and that constipation was the cause of the stomach pain. She also asked me to stop asking Lily if she had pain on passing urine, as if that would make the symptoms disappear.

Our whole family has been affected by Lily’s illness. Her older sister developed anxiety, continually asking Lily how she was feeling and becoming tearful if her sister felt sick or had a stomach ache.

A referral to the LUTS clinic in mid-2016 saw her prescribed long-term, high dose antibiotics that have progressively cleared her infection. Seven years after her first UTI, she is now free of symptoms and her school attendance is back to 100 per cent.”