UTI symptoms negative tests Tag

In 2023 England’s National Health Service (NHS) responded to public pressure by finally recognising chronic urinary tract infection (UTI) as a distinct condition requiring specialist diagnosis and treatment. The development could pave the way for patient advocates in Australia and other countries who are campaigning their own authorities for major improvements to UTI guidelines.

The Hearing Patient Voices project surveyed 410 people from around the world with chronic urinary tract infection (UTI).  The online survey measured the impact chronic UTI has on quality-of-life and focused on symptoms, various life domains, emotional wellbeing, healthcare experiences and avoidable costs to the health system.  You can read a summary, and download the full Hearing Patient Voices survey report, below.

A common urinary tract infection left Danielle with chronic symptoms that doctors misdiagnosed as interstitial cystitis (IC)—an incurable, yet questionable, urinary syndrome that is now under heavy scrutiny.  Once she found a doctor who understood her condition, she began a treatment that targeted her infection.  Read more about Danielle's story.

After frequent international travel for work, Julie developed a series of complex symptoms that were badly impacting her health.  Her symptoms were put down to an auto-immune condition that she had to live with.  Six years on she developed further symptoms – this time relating to her bladder.  Her doctors explored and treated several problems that were identified, but her bladder symptoms persisted.  After eight years of managing bladder pain and incapacitating reduced capacity and frequency, and undergoing various disappointing treatments, she decided to use her academic skills to find a proper solution.  She consulted with an Australian urologist who recommended she read 'Cystitis Unmasked' by the late Professor James Malone-Lee. They both agreed she would trial a treatment for chronic bladder infections.  Within weeks, Julie's bladder symptoms started to vanish and her life finally took to a turn for the better.  Read more about Julie's journey to reclaim her health.

Jean shared her story with us in May 2019.  After menopause things had started to go wrong.  Among her worries, Jean had developed UTI symptoms but her urine tests kept coming back negative and she was prescribed antidepressants to deal with her increasing anxiety.  She refused to accept her problems were psychological and she continued to search for answers.  Eventually she was diagnosed and treated for a chronic UTI.  Jean found Hiprex and Chinese herbs was the answer for her and she improved in leaps and bounds.  Three years after completing her combination treatment, Jean remains happy and well.  Read Jean's updated story.

Elizabeth was struck with gastroenteritis while holidaying in Hawaii. Within days she had also developed a urinary tract infection (UTI) and was treated with antibiotics.   She responded well to the treatment but several weeks later some mild urinary symptoms returned.  Although the subsequent test from the lab was positive for a UTI, she was not informed and did not receive the necessary follow-up treatment.  Her UTI symptoms continued to get worse and by now her urine tests were negative.  This is when she was told she had interstitial cystitis (IC).  Elizabeth could not get past the feeling that her UTI in Hawaii had never fully cleared. Although her doctors insisted she was wrong and there was no infection, she was determined to find the answers she needed to get better.  Read more about Elizabeth's chronic UTI story here.

When Samantha felt a urinary tract infection (UTI) come on, a negative test at the Emergency Department sent her on a pathway she never expected. In no time she was diagnosed with interstitial cystitis (IC) and she underwent repeated procedures and trialled a huge variety of medications that did nothing to stop her bladder symptoms becoming worse.  When she exhausted all options offered by her doctors, she turned to an online group for emotional support.  When she heard about chronic UTI and the diagnostic failures of UTI dipstick and culture tests, she instinctively knew this was what she had been going through for the past six years and sought the advice of a doctor who knew how to diagnose and treat chronic UTI.  With endometriosis, an ovary cyst and pudendal neuralgia having also been diagnosed, she took a multi-faceted approach to her treatment. Nine months in, Samantha is relieved to feel normal again and she has become passionate about encouraging people with confusing health conditions to find the strength and support to advocate for their own health.

We are thrilled to release our 2021 Australian-exclusive interview with Professor James Malone-Lee discussing chronic urinary tract infection (UTI).  Professor Malone-Lee has nearly four decades of experience researching UTI and treating thousands of patients with bladder conditions.  He shares information from his book Cystitis Unmasked in response to questions from an all-Australian panel featuring urologist Dr Anita Clarke, pelvic physiotherapist Alyssa Tait, chronic UTI patient representative Melinda Brown and Chronic UTI Australia's chairperson, Imelda Wilde.  Read more below from Imelda about the interview.