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Many clinicians remain unfamiliar with the diagnosis of chronic urinary tract infection, leaving many women and girls to suffer without the right support.
Urinary tract infection (UTI) accounts for a large workload in general practice and as many as one in eight preventable admissions to Australian hospitals. So common and distressing is acute UTI that it has become a political issue with government-funded “prescribing trials” aimed towards women experiencing symptoms out of hours. The popularity of such schemes with politicians speaks to the distress that UTIs cause for so many people across the community.
Bacterial cystitis is common and half of all women will develop a UTI during their lives: unfortunately, 25% of adult women (and a high proportion of girls) who experience a first episode, will go on to experience recurrent infections. Indeed, studies suggest that as many as one-third of patients treated according to current clinical guidelines, fail to respond to treatment.
As our understanding evolves, it is evident that some infections can be chronic or persistent:this is an important paradigm shift imparting practice and policy implications. Recent media coverage has drawn attention to chronic UTI (cUTI), and community-based advocacy groups, especially Chronic UTI Australia, have become a vital information repository and source of support for thousands of affected women.
Chronic UTI has caused unremitting suffering in many women and their physical pain has often been compounded by a lack of understanding of the condition. For example, Pippa, an Adelaide mother, who contracted a UTI aged 28 that did not resolve after an initial short course of antibiotics, experienced constant urinary urgency and disabling bladder pain that frequently left her housebound for the following decade. “I was told for years what I had was interstitial cystitis, that I was incurable,” she says. She was treated for cUTI with an extended course of full-dosage antibiotics and, now, has been symptom-free for over three years since finishing treatment. “I could have got 10 years of my life back if somebody just had the right knowledge,” she says.
If there is a clinical suspicion of cUTI, confirmation of the diagnosis can present challenges. Traditional dipstick testing of urine is of very limited value and the utility of standard urine microbiology has lagged compared to diagnostics in other areas. A substantial body of evidence now suggests that our diagnostic criteria are neither sensitive nor specific enough to detect many cUTI.
In cUTI, white cell thresholds may not exceed the accepted level of 10 cells used for acute bacterial cystitis. Similarly, a bacterial concentration of 105 colony-forming units (CFUs) per mL — well below the threshold of 106 used for acute infection — is typical. The presence of mixed bacteria in a specimen does not necessarily signify contamination as many cUTI are polymicrobial. Finally epithelial cells — traditionally thought to be evidence of “contamination” and believed to be evidence of a poorly obtained specimen — may represent infected bladder wall cells.
There is now strong evidence that bacteria, such as Enterococcus faecalis and other organisms, can overcome the bladder’s innate defences and develop communities within the bladder epithelial cells: the bladder wall itself becomes a reservoir for pathogens. When this intracellular colonisation occurs, urine tests may show features of infection yet not meet traditional microbiological thresholds, leading to inappropriate reassurance and antibiotic avoidance.
Urothelial cells in the urine of patients with cUTI are commonly misinterpreted as vaginal squamous cells. Confocal microscopy has, however, demonstrated these are urothelial cells being sloughed by the bladder as a defence mechanism to eradicate cUTI. Some patients have chronic symptoms and others have bladder wall colonies remaining quiescent for prolonged periods yet causing recurrent symptomatic infection. Research to improve the understanding of, and therapies for, cUTI is occurring here in Australia and globally with an evidence base for this built using genomic techniques and expanded quantitative urine cultures. For the moment, cUTI is defined by a persistent fluctuating uncomfortable or painful urinary symptoms that respond to antibiotics, with associated white and epithelial cells present in the urine.
Recognition of persistent UTI in patients with congenital anomalies, kidney stones, bladder emptying disorders, neurogenic bladder, or cystocoele is not new. What is new is recognition that a normal urinary tract may develop cUTI. Methenamine, topical estradiol, urine vaccines such as Uromune and closely monitored chronic low-dose antibiotic protocols appear to resolve a high proportion of cases of cUTI and recurrent UTI.
Following an acute or recurrent episode of infection, it is crucial to ensure that patients make a full symptomatic recovery and urinary cells normalise. A number of protocols involving the long term use of antibiotics have been studied and found effective in specialised hands. The key to management of women with cUTI lies in making the diagnosis in the first place; being alert to the diagnosis, taking a thorough history, recognising the challenges in interpreting standard diagnostic tests, and looking at urinalysis results with fresh eyes. In refractory cases, effective management will likely require specialised management from a team that includes the patient’s GP. Because of the false reassurance of many affected people, predominantly women, compassionate assessment and management protocols go beyond medications.
Many specialists — gynaecologists, urologists, infectious disease physicians, and GPs — remain unfamiliar with the diagnosis of cUTI and the failings inherent in our current interpretation of investigations. The time has come to recognise a condition that has been a source of misery for many women and girls. Clinical awareness followed by treatment aimed at eliminating chronic bladder wall colonisation of pathogens may lead to complete recovery. Ultimately this will benefit antibiotic stewardship and reduce antibiotic resistance; lifting an enormous burden for thousands of women.
Steve Robson is a professor of obstetrics and gynaecology at the Australian National University. He was formerly president of RANZCOG, where he was a chair of the clinical guidelines group, and he currently is president of the Australian Medical Association.
Professor Helen O’Connell is the president of the Urological Society of Australia and New Zealand (2023-2025). An academic urologist based in Melbourne, she was director of surgery and head of urology at Western Health from 2016 to 2021. She was a councillor for the Royal Australasian College of Surgeons from 2005 to 2014.
Natasha Robinson is the health editor of The Australian newspaper and a former broadcast journalist who recently published a series of feature articles on chronic urinary tract infection. Natasha is also a law graduate via NSW’s Legal Profession Admission Board, with a keen interest in health law and human rights.
Magdalena Simonis AM MBBS FRACGP DRANZCOG MHHS is a general practitioner, clinical associate professor with the Department of General Practice at University of Melbourne, a longstanding member of the Royal Australian College of General Practitioners (RACGP) Expert Committee for Quality Care
Clinical associate professor Aniruddh Deshpande is an academic paediatric urologist at the Children’s Hospital at Westmead, part of the Sydney Children’s Hospital Network and affiliated with the University of Sydney and the University of Newcastle. He is also the current chair of the NSW Steering Committee of the Continence Foundation of Australia.
The statements or opinions expressed in this article reflect the views of the authors and do not necessarily represent the official policy of the AMA, the MJA or InSight+ unless so stated.
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The pain and lack of sleep this illness causes is life changing. Chronic inflammation disturbs every system in my body. Recent cystoscopy showed ulcers and I was diagnosed with IC. Years ago we thought stomach ulcers were caused by stress but of course it was bacteria. I believe the bladder wall ulcers are also caused by bacteria. Mine responds to antibiotics but then after a course they are stopped and back the symptoms come. The specialist told me it’s because antibiotics reduce inflammation and I don’t have an infection. I know I do and I’m over it
Peter Lange, there is no need for a placebo study, which by the way is an outrageous suggestion when UK specialists already have diagnostics that measure the level of infection and are able to watch it decrease throughout treatment. Females for too long have been treated as unreliable narrators and this has resulted in many acute infections becoming chronic because clinicians rely on inaccurate tests rather than listening to and believing their patients who are clearly describing symptoms of infection. It is a disgrace that the outdated tests have been relied upon for so long and have been used to silence sufferers. Please watch and LISTEN, it’s time you and all clinicians questioned your useless tests rather than your patients!
Elaine, UK
This thing took away three years of my life. Often microscopic red blood and white blood cells in my urine samples – I ended up in hospital peeing straight blood at one point – but never any culture, and CT was clear, so often sent away without treatment despite being in pain. I’d be constantly sick with general infection type symptoms: vomiting, dizziness, crushing fatigue, eventually severe migraines, joint swelling, and whole body spasms. But my labs were “normal”… except for that blood in my sample… which interestingly enough, would go away on antibiotic treatment. That alone was measurable. Not a placebo effect! Reduction in WBC and RBC in urine is typical of Cuti patients in treatment, though standard testing still cannot paint a full picture.
This lead me to figure out that the standard tests had to be wrong, which lead me to Prof Malone-Lee’s work. I’ve been on the Malone-Lee treatment for nine months and greatly improved. My pelvic pain is much better, and those debilitating systemic symptoms are fading. I do wish there were more brave, understanding, and proactive doctors out there. Too maybe of us get misdiagnosed with “anxiety”, we’re gaslit, and often verbally abused when we don’t just go away to suffer in silence. I’ve lost thousands of dollars in misdirected tests and appointments, and got to the point where I couldn’t function or work. This is something GPs could mostly manage, we need your help!
An important topic of discussion. This horrid condition is ruining lives and stripping children of their childhoods around Australia. As a nation with a great healthcare system we should be able to do better on this subject.
To all the Dr’s reading this I say, have you ever had a patient have a uti who complained the symptoms returned but the msu was now coming back negative and so you chose not to prescribe more antibiotics? These cases are most likely now a chronic infection and need long term full dose antibiotic treatment regardless of a negative result. Listen to your patients. If it walks like a uti and talks like a uti then it probably is in fact a uti.
After seeing many Drs over 8 years and no 2 agreeing on what my condition was, I gratefully came across Chronic UTI Australia’s website. I brought in Professor Malone Lee’s research to my GP, contacted a urologist in the USA to oversee treatment and my GP prescribed full dose antibiotics for the past 4 years. I am now finally free of this nightmare. My symptoms were all indicative of infection it was the urine tests which were hit and miss and drs too scared to prescribe because the tests showed no infection most of the time. Drs need to look at Professor Malone Lees research and treat patients based on their symptoms. I have lost 12 years of my life by spending a lot of time in pain on the toilet all because of these stupid outdated tests and drs not having the latest research on how to treat recurrent or chronic uti. I hope more drs listen to sufferers and realise short low dose antibiotics is what is driving antibiotic resistance and recurrence of uti.
In response to Dr Lange, I would say- try to live with this condition for just ONE WEEK then see if you would propose a trial before you change your practice!! Women are being gaslit by doctors who doubt the credibility of their words. It would be impossible to make up the pain that this condition causes. It has been compared to end stage cancer. Would that be your response if the patient was male?!
Chronic UTI Australia welcomes this important statement about a condition causing life-altering chronic pelvic pain for many thousands of Australians – mainly but not solely adult women. We would like to thank the authors for their courage in calling for a paradigm shift in UTI diagnosis and treatment.
This article by leading Australian health experts follows recent recognition of chronic UTI by the United Kingdom’s National Health Service (NHS). The NHS webpage for UTI (www.nhs.uk/conditions/urinary-tract-infections-utis/) explains that chronic infections are caused by bacteria embedding into the bladder lining, where they may be difficult to detect with current UTI tests, and require specialised treatment approaches.
While an increasing number of chronic UTI sufferers are accessing appropriate diagnosis and treatment in Australia, we are contacted with depressing regularity by people whose doctors deny both the existence of chronic UTI and the fallibility of standard UTI tests.
There is an urgent need to make accurate UTI information, education and referral pathways available to GPs and other doctors. The various UTI guidelines that exist in Australia ignore the discovery of the urinary microbiome (urobiome) a decade ago and its implications for current testing tools, and fail to offer evidence-based advice for doctors treating persistent UTI. Alongside new national UTI guidelines, we need at least one multi-disciplinary specialist clinic for difficult-to-treat chronic and complex UTI – as exists in the UK and some other countries.
Chronic UTI Australia also calls for increased funding for UTI research, especially applied and translational research aimed at bringing better diagnostic tests and therapeutics to market.
The advances needed in UTI diagnosis and treatment will require cooperative action from healthcare professional bodies, researchers and research funders, and government agencies – all in collaboration with patients and their representatives.
For many years (before I retired) i put patients with recurrent UTI ,on Hiprex + vit c and found it excellent in preventing infections
I have suffered with this condition for eight very long years. I can no longer tolerate antibiotics because they have caused such severe side effects. We desperately need research into this neglected area of women’s health and a CURE so we can get our lives back. Long term, high dose antibiotics are not the answer for everyone
What about patients with continuous use of supra-pubic catheters? (CAUTI) Bacteria often show up in cultures, quite often at the time of catheter change, when the urine coming through the new catheter should be clean. We are told this is the best time to culture, and of course these patients nearly always have a high urinary WCC and at least and some red cells, on urinalysis, due to their stomas. Catheters may become colonised, with a biofilm, and we are told not to use antibiotics due to the possibility of developing resistance. Patients are not always symptomatic of these UTis. How do we diagnose accurately and treat when required? As a GP I have a few of these patients who also take cranberry supplements, which do not seem to help much.
Great article that will help to build awareness in something I see every week. Could you please provide a follow-up article with some practical guidelines for diagnosis and treatment as there are currently none available.
I would like to see a placebo controlled trial of antibiotics for cUTI before changing my practice.
This is such a common problem in females with chronic pelvic pain. Do you have any recommendations for specialist referral centres in Sydney? It is both the diagnostic and treatment pathways that are challenging to navigate-few urogynaecologists work within multidisciplinary teams.