What are chronic UTIs?
This messed-up situation has a name: chronic UTI. You’re probably familiar with the acute version – half of all women will experience at least one in their lifetime. It’s caused by bacteria entering the bladder via the urethra and multiplying rapidly, leading to symptoms such as a burning feeling when peeing, urgency, bladder pain and blood-filled wee. But for those struggling with chronic UTI, the symptoms never fully go away, even after treatment. And even though you have all the signs of an infection, the tests may not agree.
That’s the cruel twist: for decades, researchers have been flagging that the standard tests for UTI are unreliable or – as London-based urologist and leading chronic UTI researcher Professor James Malone-Lee puts it – “grossly incompetent”. In 2018, a study by the University College London, co-authored by Malone-Lee, found that the gold-standard UTI test, the midstream urine culture, missed a significant proportion of bacteria and was unable to discriminate between patients and control subjects. Urinary dipstick analysis, used in clinics to diagnose UTI, have been shown to miss more than 50 per cent of infections. “The patient is then denied treatment,” says Malone-Lee. “That infection gets more established and it becomes more of a problem to remove.”
What causes recurrent UTIs?
The reason UTIs hang around, says Malone-Lee, is that the bacteria avoid attack from the immune system and antibiotics by burrowing into the bladder wall, or clinging to it in a sticky substance called biofilm. Once embedded, they go quiet. “They’re a bit like a weed seed out in the garden, just waiting for a suitable day to open up,” he explains. “From time to time they wake up, divide and break out of the cells, causing an acute flare.” Malone-Lee’s solution is simple: he uses microscopy of a urine sample to confirm infection, with high-dose, narrow-spectrum antibiotics to destroy embedded bacteria – a process that takes, on average, a year.
While he has published studies to validate his approach and is working towards a randomised control trial, it’s not a treatment likely to be recommended by a GP. “It’s not widely accepted practice, and we obviously haven’t applied it to the Australian setting,” explains Dr Lin Li Ow from the Urogynaecological Society of Australasia. “If every GP were to start patients on high-dose antibiotics you’d see a lot of resistance building up.” She adds that it’s important to consult a specialist when symptoms recur and tests are negative. “We would recommend seeing a urologist or a urogynaecologist … to exclude any pathology in the bladder like a stone or cancer or growth that can cause this urine urgency that could be mimicking a UTI.”
What is the treatment for chronic UTIs?
Limited awareness of chronic UTI in the general medical community means many are left in painful limbo. “It pervades every aspect of your life,” says Imelda Wilde, a spokesperson for patient advocacy group Chronic UTI Australia. “You spend so much [time] going to doctors and specialists. You miss out on things with your family and friends. You get tired because your body is constantly fighting off infection. And the emotional stuff as well. Just not being believed … there’s a lot of frustration involved.” It’s why some people, such as communications manager Lauren Syzlarski, 36, have taken the drastic step of travelling across the globe for treatment. Lauren was living in Scotland when she got a UTI that didn’t fully clear after six weeks of medication. Refused a further dose, “I went from mild symptoms in October to fairly severe pain most days by November,” she recalls. “I wasn’t sleeping, I wasn’t eating … I was going back to the GP almost weekly in tears.” She ended up quitting her job and moving home to Melbourne, but returned to the UK six months later for an appointment at Malone-Lee’s clinic.
It took 22 months, but Lauren is now off medication and, so far, symptom-free. The good news for those who can’t afford a trip to London? Change is coming, albeit slowly. Wilde says Chronic UTI Australia is working with the Royal Australian College of General Practitioners to share the latest research, and scientists are developing new treatments, from probiotics to nano capsules that deliver antibiotics directly into the bladder. For anyone grappling with this recurring nightmare, it’s a glimmer of hope – we might not know when the next flare is coming, but at least we’re not riding this roller-coaster alone.