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Patient stories

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

Anne, 62, is a retired senior arts lecturer – her UTI pain was dismissed as a post-menopausal problem

“I had not experienced any particular bladder problems until the onset of this bladder condition three and a half years ago. Several urine tests taken in the GP surgery and samples sent to the laboratory came back as clear apart from three tests that registered as ‘mixed growth’ and were interpreted as contamination.

I was given a routine course of antibiotics but there was no improvement in symptoms. The pain and frequency of urination intensified to an unbearable level and I felt as if I was becoming incontinent. I managed to ease these symptoms by taking bladder relaxant drugs and painkillers. Because I am post-menopausal my doctor also prescribed hormone cream.

Three months later I saw a urologist but a full examination and tests to check the functions of the bladder proved to be normal. I was told it’s ‘just a post-menopausal problem – it’s nothing’. A cystoscopy two months later showed nothing wrong with my bladder wall.

On my final appointment I explained that I was still in intense pain but the consultant was dismissive. I told him again that my pain, flu-like symptoms and weakness felt like a bladder infection. He said that I should seek a referral to him in three months’ time if I still thought that was the case. I left the hospital in complete despair.

Searching for ‘urine infection’ online I had read about the LUTS clinic and asked my NHS doctor if I could be referred there. I was seen a few months later and immediately experienced a completely different approach to patient care compared to my hospital treatment. I was listened to and it was clear that there was a proper understanding of the symptoms and causes of this terrible condition.

At times the pain has been excruciating – like nothing else I have ever experienced in my life. A change in antibiotic saw a noticeable improvement in my symptoms, both in frequency and pain, and I was able to lead a more normal life again after having been virtually housebound.

When I reflect on my treatment I recognise that I have made real progress and that my symptoms are very gradually improving. I do understand the risks of taking long-term antibiotics but I must stress that it is the pain of this condition that is not to be underestimated.