embedded UTI Tag

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.

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.

Online information and support groups can be great places to link with others who are in a similar situation. This can help reduce feelings of isolation often experienced by people suffering silently with persistent lower urinary tract symptoms (LUTS).  Online groups allow for the sharing of information and personal experiences and are good places to access support—or to support others. We had a chat with the administrators of the Chronic and Recurrent UTI Support Group (Australia and New Zealand)—a Facebook group focused on science-based discussions around diagnosis and treatment for chronic UTI. The group has a strong emphasis on exploring solutions to overcome the challenges of accessing treatment in our region.  Online support groups are not for everyone but they can play a helpful role for many people who are seeking information and support.

People experiencing chronic pain and illness, like chronic urinary tract infection (UTI), often find their condition has as equally devastating an impact on their mental health as it does on their physical health and well-being. In a society which overwhelmingly focuses on health and ‘good’ health behaviour—you go to the doctor, follow their instructions, and get better—the impacts of having a chronic health condition are often completely unexpected, and rarely discussed.

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.