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Independents' Day

Elisabeth Makin

  • GP guidance on UTI testing should undergo NICE review, says health minister

    Elisabeth Makin's comment 17 Nov 2016 5:37pm

    I am a dentist and a patient of the Professor Malone Lee mentioned in the article. I have suffered chronic UTI for five years and it is life ruining.
    It started in my final year of dental school with an acute UTI. I had a few different courses of antibiotics and the symptoms eventually settled but didn't go away completely. I went back to my GP and asked for more antibiotics. I still had niggling low grade UTI symptoms and knew it hadn't fully gone away. Now my tests were coming back negative or as 'mixed growth of insignificance'. I became more and more unwell. I became fatigued and struggled to attend university. All the while my UTI symptoms remained. I went back to my GP and had bloods, they couldn't find anything wrong with me. I begged them for antibiotics till I was blue in the face. I knew I still had a UTI and it was making me very unwell.
    Eventually I dropped out of dental school. I went to see urologists had all the scans and a cystoscopy, I saw ME specialists. No one could work it out. I was bed bound for a year. Eventually I was referred to Professor Malone Lee at the LUTS clinic at Whittington hospital in London. When I saw him my urine was saturated with white blood cells and epithelial cells. When he said you have a UTI I cried with happiness.
    I have since been on oral antibiotics which control it, for some eradication takes 6 months, for others longer. Because the bacteria were left to live in my urine they learnt to invade the epithelial cells lining the bladder. Inside the cells they replicate hidden from wbc's and antibiotics. When the cell is shed the bacteria infect new cells. Long term antibiotics stop the reinfection of new cells. Eradication can, for some, take a long time. The long term antibiotics have given me my life back. New treatments are being developed.
    Had my GP known that both dipsticks and MSU's are NOT reliable and in fact miss up to 50% of genuine infection maybe she would have given me a longer course of antibiotics in the first place and saved me a lot of misery.
    MSU culture has been discredited in the literature as far back as 1983.
    Partial treatment of UTI because of the reliance on these insensitive tests for diagnosis is causing serious chronic disease in an estimated 0.6% of the population.
    I am part of a patient campaign Chronic Urinary Tract Infection campaign (CUTIC). We aim to raise awareness of the failings of currents testing regimes for UTI and to lobby for better guidelines for diagnosing and treating UTI.