Most women know what the burning pain of a urinary tract infection (UTI) is like – for many it only lasts a few days, but for Sarah Heaton it’s a constant problem.
Three and a half years ago, the antibiotics that had cured repeated infections for 15 years stopped working. She now suffers from agonising, unrelenting pain and needs to urinate up to eight times an hour. Because of her symptoms, Sarah had to leave the job she loved in 2021.
“It’s a very scary situation,” says Sarah, a former English teacher in her 30s who lives in Yorkshire. “I went from being independent and sociable to barely leaving the house.”
She believes all of this could have been avoided with better testing to find the cause of her UTI. And experts agree.
Around 50 per cent of women will develop a UTI, with symptoms including pain, a strong urge to urinate frequently and a stinging or burning sensation when urinating. Campaign group Chronic Urinary Tract Infections Campaign (CUTIC) estimates that for around 1.7 million women (85 per cent of UTIs occur in women) like Sarah, these infections are constant.
Former teacher Sarah Heaton talks about her urinary tract infection: ‘I went from being independent and sociable to barely leaving the house’
Adding to this is the fact that NHS diagnostic tests for UTIs are neither reliable nor sensitive enough, say experts such as Dr Cat Anderson, an NHS GP and founder of private medical practice Focus Medical Practice in Newcastle-under-Lyme, Staffordshire. She says NHS tests only detect around 60 per cent of infections.
“Patients are told they don’t have an infection and they don’t get antibiotics, so bacteria can embed themselves in the bladder wall and the infection becomes chronic,” he explains.
This is because once on the bladder wall, bacteria form a sticky “biofilm” that makes it harder for standard antibiotics to kill them.
Current NHS tests include a dipstick method using a paper strip with chemicals that react with blood, pus and bacteria; or a laboratory test, where a urine sample is cultured for a day and then tested for pathogens using the Kass criterion (for a positive result, 100,000 bacteria must be present per millilitre of urine).
However, research published last year in the journal Frontiers in Urology concluded that these laboratory methods “do not capture the majority of urinary tract microbes.” The authors from University College London called for more accurate testing, a view shared by experts.
“Current NHS tests only detect high levels of one type of bacteria; they have a high threshold and are not sensitive enough to detect smaller amounts of other bacteria, of which there may be many,” says Carolyn Andrew, director of CUTIC. “Complex UTIs often involve several types of bacteria.”
This means that sufferers can be told they don’t have a UTI. “Patients tell me they don’t believe them; I ask them if they are confusing the pain with menstrual pain or bowel problems, as if they can’t tell the difference,” says Dr. Anderson.
Carolyn Andrew adds that her organisation often hears from women “with chronic urinary tract infections who are on antidepressants and are told that their anxiety is the cause of their symptoms”.
“Anxiety can make you want to urinate more, but not all the time,” she says. “Some women are ignoring the symptoms.”
A 2017 study from Ghent University in Belgium involving 220 women with symptomatic UTIs found that standard tests detected bacteria in only 80.9 percent 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 percent tested positive for E. coli, one of the most common causes of UTIs.
PCR tests are available privately but have not been approved for use on the NHS because they have not yet been validated, says Dr Anderson.
Newer, more sensitive tests are also available privately (although GPs and NHS specialists can order them, for example if a patient is not responding to treatment).
These include the so-called “broth test,” in which urine is placed in an enriched liquid that can reveal all types of bacteria and their resistance and sensitivity to antibiotics. Results take about five days to obtain.
DNA sequencing can also identify the type of bacteria, matching more than 4,000 species. Results are available within 24 hours. “But these methods are not always accurate and can cost £200,” says Dr Anderson.
Other options include fresh urine microscopy, where the urine is examined under a microscope to look for white blood cells and epithelial cells lining the bladder wall as a sign of infection.
This service is available at the NHS lower urinary tract symptoms clinic at Whittington Health NHS Trust in London, as well as some private clinics.
“It has not yet been implemented in the NHS because it is argued that it is not specific enough,” says Dr Anderson. “However, more accurate and validated testing methods for urinary tract infections would help experts prescribe the right antibiotic for the right type of bacteria.”
Treating chronic UTIs adds to the growing burden of antibiotic resistance, where bacteria that cause infections develop ways to resist the effects of antibiotics, often after the bacteria have been repeatedly exposed to the drugs.
This is a major problem for those with recurrent infections, which account for one in five antibiotic prescriptions. In a recent survey of 775 women with UTIs by Live UTI Free, a women’s health research group, 27 percent said doctors had told them treatment options were limited or nonexistent.
Melissa Kramer, executive director of Live UTI Free, says the survey found the most common concern was that people would be left without treatment options and suffer constant pain or even face death from sepsis.
‘There are three main problems: inaccurate testing methods, antibiotic treatments that are not long enough to kill the bacteria (so they persist and can become resistant to the antibiotic used against them) and a lack of recognition of chronic UTIs as a medical condition.’
People with chronic UTIs may be prescribed a low-dose antibiotic for six months or more, but the National Institute for Health and Care Excellence (NICE) only recommends short courses for acute UTIs.
NHS diagnostic tests for UTIs are not sensitive enough, say experts such as Dr Cat Anderson, and detect only around 60 per cent of infections, leaving undetected cases potentially becoming chronic.
It changed its guidelines on nitrofurantoin, one of the most commonly prescribed antibiotics, so that it can only be prescribed for three days, although it is authorized for seven days.
“Yes, we need to be good stewards of antibiotics and reduce inappropriate prescribing, but we also need to do the right testing so we can prescribe the right antibiotics for the right amount of time,” says Dr. Anderson. “It’s no wonder that rates of recurrent and chronic UTIs increase when patients are told to take antibiotics for just three days.”
Dr Anderson said an audit of 40 patients at her GP practice found that 20 women prescribed a seven-day course of nitrofurantoin had no recurrence of UTIs, while 14 of the 20 prescribed a three-day course did have recurrences.
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 away,” she says, speaking to Good Health under a pseudonym.
‘However, when I returned, the GP said the urine test had come back negative for infection.
I have been symptom-free ever since. Sometimes I feel like my bladder is on fire. I need to urinate about 50 times on a bad day.
“I had to quit my job because I needed to go to the toilet so often,” says Ellen, who told her that her GP “is anxious and that’s what’s causing her bladder pain.”
“I am getting desperate but I cannot afford private treatment, where I can have more sensitive tests and long-term antibiotic treatment,” she explains.
Over the years, Sarah Heaton “has had multiple dipstick tests and some lab work,” but “was told she didn’t have any infections.” She was often sent to the hospital without treatment. Of the eight antibiotics she was prescribed, only two worked.
She has since been advised not to use either drug, but to keep them in reserve in case her infection becomes life-threatening, such as turning into sepsis.
She now takes high-dose prescription painkillers and Hiprex, an antiseptic treatment that acidifies urine and prevents germ growth, which is helping. “If I’d had a more accurate test all those years ago that would have identified the exact cause of my UTI, I might have avoided all this,” says Sarah.
“I’m hopeful that I’ll get better and get back to work, but there are too many women like me who suffer from chronic urinary tract infections and feel neglected and abandoned by doctors. We deserve better.”
cutic.co.uk