Excruciating pain forced me to quit my job. Half of all women will suffer as I did. But thousands are told nothing is wrong…

Most women know what the burning pain of a urinary tract infection (UTI) feels 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 helped her recurrent infections for 15 years stopped working. Now she is in excruciating, constant pain and has to urinate up to eight times an hour. Sarah was forced to quit her job in 2021 because of her symptoms.

“It’s a really 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 prevented with better testing to find the cause of her UTI. And experts agree.

Around 50 per cent of women get a urinary tract infection, with symptoms including pain, an overwhelming urge to urinate frequently, and a stinging or burning sensation when they do. The Chronic Urinary Tract Infection Campaign (CUTIC) estimates that for around 1.7 million women (85 per cent of UTIs are in women) like Sarah, these infections are constant.

This is fuelled by 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 around 60 per cent of infections.

“Patients are told they don’t have an infection and don’t need antibiotics. The bacteria can then establish themselves in the bladder wall and the infection becomes chronic,” she says.

This is because once the bacteria are in the bladder wall, they develop into a sticky ‘biofilm’, making them more difficult to kill with standard antibiotics.

Current NHS tests include a dipstick method, which uses a paper strip containing chemicals that react with blood, pus and bacteria, and a laboratory test, where a urine sample is cultured for a day and then tested for pathogens using the Kass criterion (a positive test result requires 100,000 bacteria per millilitre of urine).

Yet research in the journal Frontiers in Urology last year found that these lab methods “underreport most urinary tract microbes,” prompting the authors from University College London to call for more accurate testing — a view shared by experts.

‘Current NHS tests only look for high levels of one type of bacteria – there is a high threshold and it is not sensitive enough to pick up smaller amounts of other bacteria, of which there can be many,’ says Carolyn Andrew, director of CUTIC. ‘Complex UTIs often have multiple types of bacteria present.’

That means those affected may be told they don’t have a UTI. “Patients tell me they don’t feel believed; they’re asked if they’re confusing the pain with period pain or bowel problems, as if they can’t tell the difference,” says Dr. Anderson.

Carolyn Andrew adds that her organization often hears from women “with chronic UTIs who are prescribed antidepressants and told that their anxiety is causing their symptoms.”

“Anxiety can make you pee more often, but not all the time,” she says. “In women, the symptoms are ignored.”

A 2017 study from Ghent University in Belgium of 220 women with symptomatic UTIs found that standard testing only detected bacteria in 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 were positive for E. coli, one of the most common causes of UTIs.

PCR tests, while available privately, are not yet approved for use by the NHS because they have not yet been validated, Dr Anderson said.

There are also newer, more sensitive tests available privately (although GPs and NHS specialists, for example, may order these if a patient is not responding to treatment).

These include the ‘broth test’, where urine is placed in a spiked liquid that can reveal each 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, by looking 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, in which the urine is analyzed under a microscope for the presence of white blood cells and epithelial cells from the bladder lining. These cells can indicate an infection.

This treatment is available at the NHS Lower Urinary Tract Symptoms clinic at the Whittington Health NHS Trust in London, and also at some private clinics.

‘It hasn’t been rolled out in the NHS yet because it’s said it’s not specific enough,’ says Dr Anderson. ‘But more accurate and validated testing for UTIs would help experts give the right antibiotic for the right type of bacteria.’

The treatment of chronic UTIs contributes to the growing burden of antibiotic resistance, in which infection-causing bacteria develop ways to become resistant to the effects of antibiotics, often after the bacteria are repeatedly exposed to the drugs.

It’s a big problem for people with recurring infections, who account for one in five antibiotic prescriptions. In a recent survey of 775 women with UTIs conducted by Live UTI Free, a women’s health research group, 27 percent said doctors had told them there were limited or no treatment options.

Melissa Kramer, CEO of Live UTI Free, says the research found that the biggest concern was that those affected would run out of treatment options, be in constant pain or even die from sepsis.

‘There are three main problems: inaccurate testing methods, antibiotic courses that are not long enough to kill bacteria (allowing them to persist and 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 low-dose antibiotics for six months or longer. However, the National Institute for Health and Care Excellence (NICE) only recommends short courses for acute UTIs.

Guidelines for nitrofurantoin, one of the most commonly prescribed antibiotics, have been changed. The drug can now only be prescribed for three days, despite being approved 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 time,” says Dr. Anderson. “It’s no wonder that rates of recurrent and chronic UTIs increase when patients are told to take antibiotics for only three days.”

According to Dr. Anderson, a study of 40 patients in her general practice found that 20 women who took a seven-day course of nitrofurantoin no longer suffered from urinary tract infections, while 14 of the 20 women who took a three-day course did.

Ellen Jones, 27, a former customer service worker from east London, developed her first UTI in 2020. “I was prescribed antibiotics for three days but the pain and frequency didn’t go away,” she said, speaking to Good Health under a pseudonym.

‘When I went back, the GP said the urine test was negative for infection. But

Since then I have not been free of symptoms. Sometimes it feels like my bladder is on fire. On a bad day I have to pee about 50 times.

‘I even had to quit my job because I had to go to the toilet so often.’ Ellen says her GP told her that she was ‘anxious, and that was causing the bladder pain.’

“I’m getting desperate, but I can’t afford private treatment where I can get more sensitive tests and a long course of antibiotics,” she says.

Over the years, Sarah Heaton has undergone “multiple dipstick tests and some lab-based culture checks” but “was told she did not have an infection.” She was often sent away without treatment. Of the eight antibiotics she was prescribed, only two worked.

She has since been advised to stop taking these two drugs, but to keep them as a reserve in case her infection becomes life-threatening, for example if it develops into sepsis.

She is now prescribed high-dose painkillers and Hiprex, an antiseptic treatment that makes the urine acidic, which helps stop bacteria from growing. ‘If I had had a more accurate test all those years ago that identified the exact cause of my UTI, I could have prevented all this,’ says Sarah.

“I hope I get better and 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