‘New bladder microbiome discovery could change the way we treat UTIs’
By Olivia Willis – ABC, Australia, June 2018
By Jack Flanagan – Mail Online, United Kingdom, June 2018
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It’s time to say goodbye to frequent UTIs
By Paula Goodyer, Citro, Australia, August 2024
It’s time we recognised chronic urinary tract infection
By Helen O’Connell, Aniruddh Deshpande, Natasha Robinson, Magdelena Simonis and Steve Robson, Insight+, Australia, August 2024
Doctors demand chronic UTI strategy with up to four million sufferers in UK
By Connie Dimsdale, inews, UK, July 2024
Aussie women struggling to have chronic UTIs treated
Sarah Harris, Producer Angus Llewellyn, The Project, Network Ten, Australia, June 2024
Agony and the urge to pee: the growing evidence giving hope to chronic UTI sufferers
Sharlotte Thou and Melissa Davey, The Guardian, Australia, June 2024
The women hitting back against medical misogyny
Sarah Harris, Producer Kate Mellis, The Project, Network Ten, Australia, May 2024
‘Peeing hot shards of glass’: Struggle to treat chronic UTIs
By Zoe Madden-Smith, Re: News, New Zealand, April 2024,
UTI? There’s a spray for that – radio interview with immunologist Dr Malcolm Starkey, Monash University (starts 20:20)
Presenter Dave Marchese, Hack, Triple J, Australia, April 2024
Chronic UTIs and test flaws overlooked in ‘archaic’ guidelines: urologists(or see PDF)
By Sarah Simpkins, AusDoc, Australia, February 2024
‘Battler’s disease’: UTI sufferers’ plight relegated by medicos (or see PDF)
By Natasha Robinson, The Australian, Australia, February 2024
Hope for women of end to chronic urinary tract infection pain
By Natasha Robinson, The Australian, Australia, February 2024
Why do I keep getting urinary tract infections? And why are chronic UTIs so hard to treat?
By Iris Lim, The Conversation, Australia, February 2024
3 days of antibiotics from pharmacists could lead to chronic UTIs, experts warn
By Connie Dimsdale, inews, UK, February 2024
This researcher is trying to bring UTI treatment into the 21st century
By Vivian Ho, TeenVogue, November 2023
`Hidden´ bacteria could explain chronic urinary tract infections
Daily Mail, UK, November 2023
By Connie Dimsdale, inews, UK, November 2023
Children with life-altering chronic UTIs having to be homeschooled over lack of treatment in UK
By Connie Dimsdale, inews, UK, September 2023
Australian mum forced to fly 17,500km to treat common infection
By Raffaella Ciccarelli, 9News, Australia, April 2023
UTI sufferers still being denied treatment by GPs despite rules changing eight weeks ago
By Connie Dimsdale, inews, UK, April 2023
By Connie Dimsdale, inews, UK, April 2023
‘Nothing has worked’: Women feel ‘failed’ by UTI testing system
By Stacey Foster, itv News, UK, April 2023
Chronic UTI, the hidden health crisis ruining women’s lives and on Spotify
By Connie Dimsdale and Molly Blackall, iPodcast, UK, March 2023
UTIs: What are the burning issues?
By Dr Annie Joseph, British Society for Antimicrobial Chemotherapy (BSACP), republished February 2023
Chronic UTI sufferers face mental health crises after being ‘dismissed and gaslighted’ for years
By Connie Dimsdale, inews, UK, February 2023
Medical misogyny is failing women with chronic urinary tract infections
By Megan Warren-Lister, Open Democracy, UK, February 2023
Why aren’t there better treatments for cystitis?
By Christine Ro, BBC, UK, January 2023
Chronic UTI patients are waiting up to 12 years for a diagnosis, specialists warn
By Connie Dimsdale, inews, UK, January 2023
By Rita Maria Conry, Agnes Arnold-Forster and Gemma Duncan, UTIdocumentary.com, UK, 2022
Chronic UTIs Plague Women Across The UK – Why Does No One Care?
By Agnes Arnold-Forster, Refinery29, UK, August 2022
Brisbane woman in extreme pain for six years as ‘common’ infection went undiagnosed
By Raffaella Ciccarelli, 9News, Australia, August 2022
By Connie Dimsdale, inews, UK, August 2022
By Connie Dimsdale, inews, UK, August 2022
By Connie Dimsdale and Poppy Wood, inews, UK, July 2022
By Connie Dimsdale, inews, UK, March 2022
By Amy Beecham, Stylist UK, February 2022
Dismissed, ignored and ridiculed: How doctors are letting women down when it comes to UTIs
By Hannah Fern, The Independent, United Kingdom, January 2022
‘The treatment is failing people’: Campaigners call for better diagnosis of urinary tract infections
by Amrit Birdi, ITV News Central, United Kingdom, December 2021
88
8
By Molly Blackall, ITV News Central, United Kingdom, October 2021
8
8
By Nana Baah, Vice, London, September 2021
UTIs: What are the burning issues?
By Dr Annie Joseph, British Society for Antimicrobial Chemotherapy (BSACP), September 2021
My daughter was one of thousands of Australians let down by inadequate UTI testing
By Deirdre Pinto, The Guardian, Opinion, Australia, May 2021
Rapid Response: Re: Uncomplicated urinary tract infection in women
By Chronic UTI Australia, The BMJ, United Kingdom, April 2021
Rapid Response: Re: Uncomplicated urinary tract infection in women
By Emeritus Professor James Malone-Lee, The BMJ, United Kingdom, April 2021
Confronting the urinalysis tyrant
By Emeritus Professor James Malone-Lee, BJGP Life, March 2021
Why women’s agonising UTIs are still being misdiagnosed
By Lois Rogers, The Daily Mail, United Kingdom, January 2020
By Penny Carroll, Australian Women’s Health Magazine, December 2019
Rise in persistent UTIs could be linked to antibiotics crackdown
By Hannah Devlin, The Guardian, United Kingdom, October 2019
The burning question: Why can’t doctors help end the misery of urine infections?
By Linda Geddes, The Daily Mail, United Kingdom, September 2019
Is it time to rethink midstream urine culture for UTI diagnosis?
By Dr Evelyn Lewin, NewsGP, Australia, June 2019
‘UTI tests could be missing a huge number of women with infections, experts say’
By Caroline Zielinkski, ABC News, Australia, June 2019
By Dana G Smith, Medium, United States, April 2019
‘Antibiotic resistance plan to fight urgent global threat’
BBC, United Kingdom, January 2019
‘UTI test often fails to detect infection, say researchers: Study suggests standard test, widely used since 1950s, does not work for chronic sufferers’
By Sarah Boseley – The Guardian, United Kingdom, December 2018
‘Why won’t my UTI go away? 4 things to know about chronic UTI’
By Suzannah Weiss – Bustle, United States, December 2018
‘Urinary tract infections: How they’re prevented, diagnosed and treated’
By Jo Khan – ABC, Australia, October 2018
‘In the name of science: Australian chronic UTI suffferer, Imelda Wilde talks about her experience’
By Maiken Scott and Jacqueline Sophia – The Pulse Podcast, WHYY, United States, October 2018
(Imelda’s commentary begins at 33:40)
‘New bladder microbiome discovery could change the way we treat UTIs’
By Olivia Willis – ABC, Australia, June 2018
By Jack Flanagan – Mail Online, United Kingdom, June 2018
‘Bacteria have made a home in your bladder. What do they do?’
By Liam Mannix – Sydney Morning Herald, Australia, May 2018
‘Diagnosing UTIs is a dog’s breakfast, and that’s affecting women: an interview with Professor James Malone-Lee’
By Anna Maria Tremonti – The Current, CBC Radio One, Canada, April 2018
Rapid Response: ‘Urinary infections are complex and hard to treat’
By Chronic UTI Australia, The BMJ, United Kingdom, December 2017
‘Urinary infections are complex and hard to treat’
By Professor James Malone-Lee, published in the British Medical Journal, December 2017
‘New UTI test detects more bacteria than standard test’
Healio, United States, June 2017
‘Oh my UTI: Everything you need to know about Urinary Tract Infections and how to battle through’
By Suzanne Harrington – Independent, Ireland, May 2017
‘UTI test used by GPs gives wrong results in at least a fifth of cases, study claims’
By Hannah Devlin – The Guardian, United Kingdom, April 2017
By Victoria Allen – Daily Mail, United Kingdom, April 2017
‘Everything you ever wanted to know about urinary tract infections’
By David Cox – The Guardian, United Kingdom, April 2017
‘GP guidance on UTI testing should undergo NICE review, says health minister’
By Caroline Price – Pulse, United Kingdom, November 2016
By Jo Waters – Daily Mail, United Kingdom, November 2016
‘Snakes and bladders: how patients saved a pioneering medic cast down by NHS rules’
By Ysenda Maxtone Graham – The Spectator, United Kingdom, October 2016
By Martyn Halle – Daily Mail, United Kingdom, August 2016
‘Common test for bladder infections misses too many cases’
By Nancy Shute – NPR, United States, November 2013
Table of Contents
×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