How faulty tests could deny YOU the antibiotics you need
AFter three urinary tract infections (UtIs) in less than three years, Fiona rose was only too familiar with the painful symptoms. ‘I felt as though I was being cut inside whenever I went to the loo,’ says Fiona, 24, a customer data analyst from Yeovil, Somerset.
each time Fiona would go to her GP who, having listened to her symptoms, would prescribe antibiotics, and within days she would recover. However, when, in November 2015, she felt the symptoms once again, her experience was very different.
‘I’d just moved to Bristol to start a new job and had joined a new GP practice,’ she recalls.
rather than rely on her description of her symptoms to diagnose a UtI, her new GP gave her a urine ‘dipstick’ test — where a specially treated plastic strip is exposed to drops of urine to check for the presence of an enzyme, leukocyte esterase, which provides evidence of a bacterial infection.
Fiona’s test came back as negative, and rather than prescribe antibiotics, the GP questioned whether Fiona might just be stressed.
‘they asked me if I was having problems at work or if my relationship with my boyfriend, James, was on the rocks,’ Fiona says.
She had to go home and put up with her pain, but the symptoms only worsened. In six months, Fiona returned to her surgery five times — each time she saw a different GP who did another urine test, and each time the result was negative.
‘By then my urinary tract felt raw and I couldn’t sleep at night,’ says Fiona. ‘I was throwing up several times a day, and my stomach was swollen with the inflammation in my bladder.’
But because of the test results, her GPs refused to believe she had an infection.
What she didn’t know was that the validity of these tests had been under scrutiny for years.
there are two standard tests given by GPs to women who have a suspected UtI. One is the dipstick test Fiona had, the other involves the urine sample being sent to a laboratory for testing. Yet since the early Nineties, various studies have shown that a substantial number of women with a UtI will be found to have no evidence of a bacterial infection.
A new study has highlighted the scale of the problem.
Published in April in the journal Clinical Microbiology and Infection, it found that while one in five of 220 women with UtI symptoms, such as burning pain on urination and the need to urinate frequently, had a negative result from a standard urine test, almost every woman in the group (98 per cent) was diagnosed with a bacterial infection when the samples were subjected to a more advanced technique. Known as quantitative PCr (polymerase chain reaction), it’s designed to spot tiny quantities of bacterial DNA. the test, however, is not widely available and is currently used only for research.
‘the message for doctors is that if a woman has typical urinary symptoms, she has a UtI. there is nothing more to explore,’ says lead researcher Dr Stefan Heytens of the Department of Family Medicine at the University of Ghent in Belgium.
Around four million British women develop a urinary tract infection every year, most frequently cystitis, an infection of the bladder. Women are more at risk because they have a shorter urethra — and so there is a shorter distance for bacteria to travel to reach the bladder.
UtI symptoms account for one in 20 women’s GP appointments — and a significant proportion of the 65 million urine specimens col- lected every year in the NHS. Patients with mild to moderate symptoms are sometimes advised to take ibuprofen and let the infection get better on its own. Doctors can also prescribe an antibiotic without testing.
there is no national guidance on which women with urinary tract symptoms should be tested for evidence of a bacterial infection. But increasing concern about resistance to antibiotics has led to a new dogma for doctors on the importance of getting solid evidence of a bacterial infection before prescribing medication.
‘What’s happened is that two tests, both the dipstick and the standard culture test, have been engraved into national guidelines despite the fact both have been shown repeatedly to be too insensitive to be reliable,’ says James Malone-Lee, professor of medicine at University College London, who runs a UtI clinic at Whittington Hospital, North London.
As well as doubts as to whether the tests are sufficiently sensitive, there’s concern about how they are carried out.
Advice on cystitis to ‘drink plenty of fluids’ to flush out the infection is positively unhelpful. ‘It’s impossible to wash bacteria out of the urinary tract,’ says Professor Malone-Lee.
‘the bacteria responsible for infection are either inside the cells of the bladder or attached to the cells via a glue-like substance that they excrete.
‘ What happens when you increase your fluid intake is that your urine is diluted, making it more likely to get a negative result, Agony: Sufferer Fiona Rose at least with current diagnostic tests.’ A further problem is that patients are often not told it’s essential that the urine specimen should be collected mid-stream.
Urine can otherwise be contaminated by the bacteria that collects in the urethra outside the bladder, that are unconnected to any infection developing inside it.
the test result is then discarded as contaminated. Yet the reality is that busy receptionists are often the ones who ask you to collect a urine specimen at the GP surgery and hand over a container without the blush-making instructions.
‘It’s not OK for women to be handed a container and told to “do” a urine sample,’ says Professor Frank Chinegwundoh, a consultant urologist at Barts Health NHS trust in London.
‘there’s likely to be all sorts of debris in the urethra and it’s essential to allow the first flow of urine to wash away this accumulation of bacteria or the specimen result will come back as inconclusive and they will need to repeat the test, delaying treatment.’ A survey of 176 hospital trusts that responded to a recent Freedom of Information request found that one in five urine cultures is ‘ possibly contaminated’ and requires retesting.
But that still leaves the issue of the quality of the tests.
Alison taylor, founder of the Chronic UtI Campaign (CUtIC), says many people with treatable chronic UtIs have been previously wrongly diagnosed with interstitial cystitis, also known as painful bladder syndrome. this is a form of cystitis that is not caused by bacteria and therefore not able to be treated with antibiotics.
‘there are many women with these conditions who may find it worthwhile to get a more appropriate test to see if they have bacteria in the urine,’ Alison says.
three years ago, Alison’s daughter Alice, now six, developed classic UtI symptoms.
‘Doctors at the local hospital told us she had painful bladder syndrome — urine tests came back as “contaminated” and were judged to be negative. So she was refused antibiotics.’
Alice couldn’t sleep at night or attend school, had low energy, urinary frequency and urgency 24/7 and pain on going to the toilet. ‘She told me she wanted to die,’ says her mum.
Alice was subsequently diagnosed with a chronic UtI that is polymicrobial — involving different types of bacteria — and is being treated by Professor Malone-Lee, whose clinic in North London is one of the few to specialise in the problem. ‘She was on antibiotics for nine months but has been off them and symptomfree for 18 months,’ says Alison. HAvING
read about the clinic, Fiona made an appointment to see Professor Malone-Lee in July last year. She was diagnosed with a chronic UtI based on her symptoms and an examination of a urine specimen under a microscope showing a level of white blood cell activity.
‘It’s a simple but most reliable method, and one I would like to see adopted far more widely,’ says Professor Malone-Lee.
Fiona has been on a high dose of a narrow spectrum antibiotic for a year — ‘I’m told it’s an antibiotic to which you can’t become resistant,’ she says.
She feels well on the way to recovery and is optimistic. ‘I’ve still got symptoms but they’re manageable and my life is good.’
She has no plans to stop taking antibiotics. ‘I won’t be on them for ever, but it could be another year or more.’ Her side- effects include a sensitive tummy, but as she says: ‘that’s the far lesser evil of the two.’
3.4m Number of men over 50 with urinary infections