This website uses cookies to allow us to understand our visitors and provide the best experience and information. If you prefer, you can turn off cookies in your browser.
Access to this website is also based on acceptance of our Terms of Use. |
Chronic urinary tract infection (chronic UTI) is a largely unrecognised condition that affects many people, with the majority being women. Most will never receive an accurate diagnosis or appropriate treatment for their condition. In recent developments, the NHS website in the United Kingdom now acknowledges chronic UTI as a new category of UTI. You can read more here.
Anyone can develop a chronic UTI and researchers say the biggest risk factor is having had a UTI. Between 25–35 percent of people treated for a normal, acute UTI fail that treatment and many go on to develop a complicated, embedded infection that is more difficult to diagnose and treat.
This site contains information about chronic UTI that will help you understand this condition. Once educated, we encourage you to become proactive in your own health by asking questions, starting an open conversation with your doctor and sharing information about chronic UTI.
A chronic UTI develops when normal UTI bacteria evade immune or antibiotic attack and burrow into the bladder wall (urothelium) for safety. Once the bacteria become embedded within the cells of the urothelium, the infection becomes increasingly difficult to diagnose using current testing methods, and is challenging to treat. There is little to no acknowledgement or recognition of chronic UTI in Australia, despite the impact being widespread. Read more about chronic UTI here. You can also download our UTI factsheet here and share it with your doctor.
The answer is, YES! If you have UTI symptoms but your test results come back negative, you have good reason to question these tests. Current gold standard UTI testing is being used for a purpose it was not originally designed for. Inadequate testing could be a major underlying contributor to the development of chronic UTI and other undiagnosed Lower Urinary Tract Symptoms (LUTS). Read more about UTI testing. You can also download our UTI factsheet here and share it with your doctor.
If you live in Australia and you suspect you have a chronic UTI, it’s highly unlikely you will be accurately diagnosed, let alone receive appropriate treatment. However, the good news is a growing number of proactive and educated Australians are now being diagnosed and properly treated for chronic UTI. Read more about how they are doing this.
Many people diagnosed and successfully treated for a chronic UTI were first diagnosed with a urinary syndrome. Read more about common chronic UTI symptoms that are overlooked due to negative UTI tests.
You’re not alone! There’s a whole online community out there researching and discussing chronic UTI, and supporting each other around the clock.
Check our FAQ section for a current list of online chronic UTI groups, websites and other resources we know about.
You can also stay connected with our online community by subscribing to our quarterly newsletter.
You can also join us on Facebook, Twitter , Instagram and YouTube.
A young adult writes of her experiences as a child:
“I developed a chronic UTI as a result of recurrent childhood urinary infections which were repeatedly misdiagnosed and left untreated, resulting in severe bladder and kidney symptoms which left me with a diagnosis of interstitial cystitis. I am now 22 years old and this condition has stripped me of my entire childhood.
“I started to develop symptoms of severe urinary frequency and urgency when I was 6 years old. When my parents initially took me to see my GP, a urine dipstick was carried out and showed no signs of infection. A subsequent culture showed insignificant bacterial growth, resulting in no further treatment. When my symptoms subsequently worsened over the next 3 months, further negative dipsticks and cultures were carried out and I was misdiagnosed with overactive bladder syndrome. By this time, my urinary frequency had progressed to the point where I was urinating every 10 minutes and could not be away from a toilet for any length of time. My parents and school teachers were advised to encourage me to train my bladder to hold more urine by withholding access to a toilet, which resulted in such severe pain and embarrassment that I became terrified of going to school and missed a significant amount of my primary school education.
“Coincidentally, recurrent ear infections throughout my childhood meant that I was prescribed numerous short courses of antibiotics, which somewhat helped to reduce my bladder symptoms. However, my symptoms would recur quickly after the antibiotic course was finished. Despite this clear correlation in symptoms, any suggestion of an infection was dismissed repeatedly by my GP.
“I battled through my teenage years with fluctuating bladder symptoms that often left me leaving the classroom several times during school lessons and avoiding school trips and social interaction for fear of suffering bladder symptoms. When I was 17, I suddenly developed a severe worsening of symptoms, resulting in immense burning during urination, severe urgency, severe bladder pain and a sensation that I had a boiling hot marble stuck in my urethra. I saw my GP, who diagnosed me with a UTI based on my symptoms and prescribed me with a week-long course of antibiotics. However, despite a slight improvement in my symptoms during this time, the symptoms continued to linger. When my GP subsequently sent my urine off for culture, it revealed mixed growth of doubtful significance, and I was diagnosed with “post-UTI irritation” and placed on oxybutynin. This pattern of events continued to repeat over the next 3 months, with numerous short 3-day courses of antibiotics, oxybutynin, Vesicare and amitriptyline being prescribed in an attempt to relieve my pain.
“Over the course of the next 2 years, my symptoms continued to worsen. I saw my GP hundreds of times and was referred to a total of two urogynaecologists and two urologists, all of whom either diagnosed me with overactive bladder or interstitial cystitis, and one of who claimed that my symptoms were psychological in nature and that my brain was simply “wired differently” to everyone else. I underwent two urodynamic studies, three KUB ultrasounds and two rigid cystoscopies under anaesthetic, the second of which I also underwent a ureteroscopy, retrograde study, urethral dilation, ureter dilation and bladder distension following a misdiagnosis of kidney stones after a poor-quality CT scan. Unfortunately, these investigations caused a massive deterioration in my symptoms and I was hospitalised on multiple occasions with severe uncontrollable pain and vomiting, kidney infections, urinary retention and passing frank blood clots that were so thick that I was unable to pass urine. Each time I was admitted to hospital and given IV antibiotics, my symptoms would improve dramatically, only to relapse as soon as the course had finished.
“By the time I self-referred to ***** private clinic in 2015, I was near suicidal with pain. My symptoms included severe, debilitating pain in my urethra, bladder, kidneys and vagina, urine retention that frequently left me unable to pass urine for 24 hours at a time, significant voiding issues and incredible urgency which felt as though my bladder was tying itself in knots. I frequently passed thick blood clots, and the immense urethral burning that plagued me with this condition felt as though someone had filled my urethra with petrol and set it on fire. I often awoke at night screaming with pain because the pain of leaking urine in my sleep was so terrifying that I often thought I was being attacked.
“[The clinic] diagnosed me with a chronic UTI via microscopy on a fresh, unspun urine sample and immediately placed me on an extended course of antibiotics. Although my progress has been slow as a result of so many years of inadequate treatment resulting in a deeply embedded infection, I have finally reached the stage where my symptoms are under control and I do not require the care of urologists or my GP with regards to my bladder symptoms. I am now able to live a relatively normal life with minimal bladder symptoms, and I have returned to work and university. However, as a result of the extensive strain that my untreated chronic UTI has placed on my autonomic nervous system over the past 16 years, I have been diagnosed with postural orthostatic tachycardia syndrome, inappropriate sinus tachycardia and gastrointestinal motility problems, thought to be due to gastroparesis, which are likely to be ongoing issues throughout my life.
“My greatest regret is that so many opportunities were missed to treat my symptoms when I was a child. Had I been given early access to treatment, my lifelong suffering could have been entirely preventable. I can only hope that in the future, children like myself will not be confined to the suffering and trauma that I have experienced.” [i]
[i] Malone-Lee, J., Cystitis Unmasked, 2021, pp241-244, tfm Publishing Limited, Castle Hill Barns, Harley, Shrewsbury, UK https://www.tfmpublishing.com/cystitis-unmasked