Most women know what the burning pain of a urinary tract infection (UTI) is like – for many it lasts just a few days, but for Sarah Heaton it is a constant problem.
Three-and-a-half years ago, the antibiotics that for 15 years had cleared the repeated infections stopped working. Now she is in agonising, relentless pain and needs to pass urine up to eight times an hour. Due to her symptoms, Sarah had to quit the job she loved in 2021.
‘It’s a very scary situation,’ says Sarah, a former English lecturer, who is in her 30s and lives in Yorkshire. ‘I went from being independent and sociable to hardly leaving the house.’
She believes all of this could have been avoided with better tests to find the cause of her UTI. And experts agree.
About 50 per cent of women will develop a UTI, with symptoms such as pain, an overwhelming urge to urinate often, and a stinging or burning sensation when they do. The campaign group Chronic Urinary Tract Infection Campaign (CUTIC) estimates that for about 1.7 million women (85 per cent of UTIs are in women) like Sarah, these infections are constant.
Former lecturer Sarah Heaton says of her UTI: ‘I went from being independent and sociable to hardly leaving the house’
Fuelling this is the fact that the NHS’s diagnostic tests for UTIs are unreliable and not sensitive enough, say experts such as Dr Cat Anderson, an NHS GP and founder of the private Focus Medical Practice in Newcastle-under-Lyme, Staffordshire. She says NHS tests only pick up about 60 per cent of infections.
‘Patients then get told they don’t have an infection and don’t get antibiotics – so the bacteria can become embedded in the bladder wall and the infection becomes chronic,’ she says.
That’s because, once in the bladder wall, the bacteria develop into a sticky ‘biofilm’, which makes it harder for standard antibiotics to kill them off.
Current NHS tests include a dipstick method using a paper strip with chemicals that react to blood, pus and bacteria; or a lab test, where a urine sample is cultured for a day then tested for pathogens using the Kass criterion (for a positive test result, 100,000 bacteria must be present per millilitre of urine).
Yet research in the journal Frontiers in Urology last year found that these laboratory methods ‘under-report most of the urinary tract microbes’. The authors from University College London called for more accurate testing – a view shared by experts.
‘The current NHS tests only look for high levels of one type of bacteria – there is a high threshold and it’s not sensitive enough to pick up smaller amounts of other bacteria, of which there could be many,’ says Carolyn Andrew, director of CUTIC. ‘Complex UTIs often have multiple types of bacteria involved.’
This means those affected can be told they don’t have a UTI. ‘Patients tell me they feel disbelieved; they get asked if they are confusing the pain with period pain or bowel trouble, as if they can’t tell the difference,’ says Dr Anderson.
Carolyn Andrew adds that her organisation often hears from women ‘with chronic UTIs being put on antidepressants and told their anxiety is causing their symptoms’.
‘Anxiety can make you want to pee more, but not all the time,’ she says. ‘Women are having symptoms dismissed.’
A 2017 study by the University of Ghent in Belgium involving 220 women with symptomatic UTIs found that standard tests only detected bacteria in 80.9 per cent of samples. However, when retested with a more sensitive polymerase chain reaction (PCR) test (which can identify more bacteria than traditional lab tests), 95.9 per cent were positive for E.coli, one of the most common causes of UTIs.
PCR tests are available privately, but haven’t been approved for use on the NHS, because they haven’t yet been validated, says Dr Anderson.
Newer, more sensitive tests are also available privately (although NHS GPs and consultants can order them, for example, if a patient isn’t responding to treatment).
These include the ‘broth test’, where the urine is put in an enriched liquid that can reveal every type of bacteria and their antibiotic resistance and sensitivity. It takes about five days to get the results.
DNA sequencing can also identify the type of bacteria, checking for matches with more than 4,000 species. It gives results within 24 hours. ‘But these methods are not always accurate and can cost £200,’ says Dr Anderson.
Other options include fresh urine microscopy, where urine is analysed under a microscope to look for white blood cells and epithelial cells from the bladder wall lining as a sign of infection.
This is available at the NHS Lower Urinary Tract Symptoms clinic at the Whittington Health NHS Trust in London, as well as some private clinics.
‘It hasn’t yet been rolled out on the NHS because it is argued that it is not specific enough,’ says Dr Anderson. ‘Yet more accurate and validated testing methods for UTIs would help experts give the right antibiotic for the right type of bacteria.’
Treating chronic UTIs adds to the growing burden of antibiotic resistance – where infection-causing bacteria develop ways to resist the effects of antibiotics, often after the bugs have repeated exposure to the drugs.
It’s a significant problem for those with recurrent infections, who account for one in five prescriptions for antibiotics. In a recent survey of 775 women with UTIs carried out by Live UTI Free, a women’s health research group, 27 per cent said they’d been told by doctors there were limited or no treatment options.
Melissa Kramer, CEO of Live UTI Free, says the survey found the most voiced concern was that those affected would run out of treatment options and be left in constant pain or even face death from sepsis.
‘There are three main issues: inaccurate testing methods, antibiotic courses that are not long enough to kill off bacteria [so they persist and may become resistant to the antibiotic used against them], and a lack of recognition of chronic UTIs as a medical condition.’
Those with chronic UTIs may be prescribed a low-dose antibiotic for six months or longer – but only short courses are recommended by the National Institute for Health and Care Excellence (NICE) for acute UTIs.
The NHS’s diagnostic tests for UTIs are not sensitive enough, say experts such as Dr Cat Anderson, and pick up only about 60 per cent of infections – leaving the undetected cases to potentially became chronic
It changed its guidance on nitrofurantoin, one of the most commonly prescribed antibiotics, so that it could only be prescribed for three days, although it is licensed for seven days.
‘Yes, we need to be good stewards of antibiotics and reduce inappropriate prescribing, but we also need the right testing so we can prescribe the right antibiotics for the right amount of time,’ says Dr Anderson. ‘It’s no wonder rates of recurrent and chronic UTIs are rising when patients get told to take antibiotics for just three days.’
Dr Anderson said an audit of 40 patients in her GP practice found 20 women prescribed a seven-day course of nitrofurantoin had no recurrence of UTIs, whereas 14 out of 20 prescribed a three-day course did.
Ellen Jones, 27, a former customer service worker from east London, had her first UTI in 2020. ‘I was prescribed three days of antibiotics but the pain and frequency didn’t go,’ she says, speaking to Good Health under a pseudonym.
‘Yet when I went back, the GP said the urine test was negative for infection. But
I haven’t been free of symptoms since. Sometimes it feels like my bladder is on fire. I need to pass urine about 50 times on a bad day.
‘I even had to quit my job as I needed to go to the bathroom so much.’ Ellen says her GP has told her she’s ‘anxious, and that’s causing the bladder pain’.
‘I’m getting desperate but can’t afford private treatment, where I can get more sensitive testing and long-term antibiotic treatment,’ she says.
Over the years, Sarah Heaton has ‘had multiple dipstick tests and some lab-based culture checks’, but ‘was told [she] had no infection’. Often she would be sent away without treatment. Out of eight antibiotics she has been prescribed, only two worked.
She has since been advised that these two should not be used but kept in reserve in case her infection becomes life-threatening, such as if it developed into sepsis.
She’s now on high-dose prescribed painkillers and Hiprex, an antiseptic treatment that makes urine acidic, discouraging the growth of bugs, which is helping. ‘Had I had a more accurate test all those years ago that identified the exact cause of my UTI, I might have avoided all this,’ says Sarah.
‘I’m hopeful I’ll get better and looking to go back to work. But there are too many women like me with chronic UTIs who feel disbelieved and abandoned by doctors. We deserve better.’
cutic.co.uk
