Urinary tract infections (UTIs) are typically short-lived and treatable with antibiotics, but for thousands of women and children, they can persist for years, causing debilitating pain and emotional distress. Poppy, a student who first contracted a UTI while travelling in Malaysia, has suffered for 15 years. Despite repeated courses of antibiotics, her infection became chronic, leaving her in a 'cycle of infection' that doctors have been unable to break.
The standard NHS test for UTIs, which looks for bacteria in a urine sample, often fails to detect chronic infections. Professor James Malone-Lee, a consultant who recently retired from the Whittington Hospital in north London, argues that the gold-standard test, used since the 1950s, is 'not fit for purpose' because it misses bacteria hidden in the bladder lining. A study by Dr Jennifer Rohn at University College London found that the test 'failed spectacularly' compared with DNA analysis, which picked up infections the standard test missed every time.
Women with chronic UTIs report feeling dismissed by healthcare professionals. Jade Henderson, 27, from Durham, says her GP was 'none the wiser' and that a urologist 'rolled his eyes' at her. She experienced constant discomfort and was unable to work, and her relationship broke down partly due to the impact on her sex life. Poppy recalls a male consultant suggesting she might be 'washing too zealously' and male GPs asking why she was crying. 'I don't understand how we can do heart transplants and land on the moon and not kill the bacteria in my bladder,' she says.
Malone-Lee's approach involves long-term antibiotics, sometimes for months or years, which has drawn criticism from some in the medical establishment. However, a published review of outcomes for 624 women treated over 10 years at his clinic showed improvement. Many women now turn to online support groups and seek help at the Whittington Hospital's clinic, which continues his work. The condition, often labelled as painful bladder syndrome or interstitial cystitis, remains poorly understood, but advocates argue that a change in diagnostic practices is urgently needed.
