Chronic UTI Australia is the nation’s only patient advocacy group for chronic urinary tract infections. Established in 2018, the organisation is raising awareness of the high failure rates of current UTI tests and treatment – and the fact that people are developing chronic, embedded bladder infections as a result. In some cases, undiagnosed or poorly treated UTIs can lead to serious kidney infections, prostatitis and even sepsis.
Most chronic UTI patients are women, but the condition also affects men and children. They typically experience severe ongoing pain and devastating impacts on their quality-of-life. Due to proven deficiencies with UTI tests, they are often misdiagnosed with incurable urinary syndromes such as ‘interstitial cystitis’, or other pelvic pain syndromes, and subjected to unhelpful and potentially damaging treatments and interventions.
Chronic UTI Australia believes the condition is an increasing public health problem due to a ‘perfect storm’ of factors: doctors are increasingly under pressure to limit their antibiotic prescribing; antibiotics are becoming less effective in clearing acute infections; and doctors often dismiss patients’ symptoms because negative results from discredited tests falsely reassure them that there is no infection.
Chronic UTI Australia strongly supports the research and development of safe and effective alternatives to the protracted courses of antibiotic treatment currently needed to clear infections once they have become embedded.
Emma lost her baby and lived in pain for more than ten years before being properly diagnosed and treated for chronic UTI.
Emma was 21 years old when she woke in pain with her first urinary tract infection (UTI). The symptoms went away quickly with treatment, only to return a few days after finishing the antibiotics. This pattern repeated itself constantly over the next two years, until Emma pushed to see a urologist. The urologist told Emma she did not have an infection and instead diagnosed her with interstitial cystitis, a lifelong inflammatory bladder condition with no known cause or cure.
For more than ten years, Emma battled with chronic – often agonising – bladder pain and urinary frequency. Treatments included a battery of pain medications, anti-inflammatories and antispasmodics, which had little effect. Although Emma tried to manage her symptoms with a careful diet and pelvic floor therapy, the pain forced her to seek emergency department treatment many times and affected every area of her life. She wonders now how she kept working and functioning.
When Emma became pregnant in late 2017, she experienced bleeding in her first trimester. She was diagnosed with the condition placenta previa – where the placenta lies low and can block the baby’s exit during birth. Blood tests also showed very high levels of C-reactive protein (CRP), a marker of inflammation. Emma was admitted to hospital for monitoring but, tragically, went into labour 21 weeks into her pregnancy. Her baby boy did not survive.
The loss of her baby propelled Emma’s intense search for answers to explain her ongoing pain. Tests to investigate her high CRP level showed she most likely had an undiagnosed infection, which had entered the baby’s amniotic fluids. However, the source of the infection remained a mystery – blood and urine culture tests repeatedly came back negative.
Independently, Emma pursued a different form of testing based on DNA analysis capable of identifying thousands of different pathogens. Although the results showed that Emma did indeed harbour pathogenic bacteria in her bladder, as well as an overgrowth of ‘good’ bacteria, she was reluctant to re-embark on the merry-go-round of short-term antibiotics that gave only temporary relief. Her instinct proved correct – as she discovered after learning about Professor James Malone Lee and his chronic UTI protocol.
Professor Malone-Lee, Emeritus Professor of Medicine at University College London, believes embedded infections cause most cases of chronic lower urinary tract symptoms. These infections often remain undetected due to the staggering failure rates – up to 80% - of standard UTI tests. His team diagnoses chronic UTI based on patients’ symptoms and the presence of certain cell types in fresh urine. Treatment involves protracted courses of antibiotics, as once infections become embedded in the bladder wall, they are difficult to clear.
Emma found a general practitioner located in Hobart who was prepared to follow the protocol developed in United Kingdom to treat chronic UTI. Her pain and frequency gradually improved, and she became pregnant within a few months of starting the treatment. While continuing treatment and being monitored closely by her doctor, she remained well throughout the pregnancy, giving birth to a beautiful baby girl early in late May 2019. Emma is now mostly symptom free and has dramatically reduced her pain medications. After being misdiagnosed and living in pain for over a decade, she is looking forward to completing her chronic UTI treatment soon and enjoying being a mum to her daughter.