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.
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.
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.
Linda had bladder issues for as long as she can remember. Even as a child she was aware she needed the bathroom more than most. It was inconvenient and sometimes embarrassing, but she developed strategies to manage social events without drawing too much attention to her toilet trips. It was after menopause that her bladder symptoms escalated and her strategies and short-course antibiotics stopped working. Linda did some research and asked her GP to refer her to a clinic specialising in chronic UTI and other bladder conditions. At her first appointment she was diagnosed with a chronic UTI and she has never looked back. Read how Linda went from an entire lifetime managing a troublesome 'weak bladder' to living a fulfilling, fully productive and happy life.
Diane started to get recurrent UTIs several years after surgery for urinary incontinence using transvaginal tape (TVT). The surgery was successful but for a time she needed a catheter to empty her bladder. After a routine colonoscopy and stopping hormone replacement therapy (HRT), a tsunami of UTIs soon followed. After completing a short course of antibiotics, her infection returned without fail. This happened time and again and she was having UTIs monthly. She learned about chronic UTI through an online support group and asked her urologist to trial her with an evidence-based treatment protocol for chronic UTI used in the United Kingdom. With continuous, full dose antibiotics for six months, she is thrilled to report she has been UTI and symptom free for two years. Read more about Diane's story here.
Kyla's recurrent UTI began in her late teens. The infections were so regular and persistent that it completely dominated her 20s. Each time she had sex she would end up with a UTI and in acute pain at the hospital emergency department. She was so ill dealing with a UTI, or getting over one, that she missed out on socialising with her friends and having fun—instead she was often home in bed wondering what her future held. She was referred to specialists who ordered all types of bladder tests and procedures. Nothing worked and she was discharged back to the care of her general practitioner (GP). The GP referred her to another UTI specialist, but this time was different. The specialist diagnosed her with a chronic UTI and started a treatment protocol that turned her life around. Her improvement has been slow and bumpy, but after seven years she is living a normal life and is sure she will be off her treatment very soon. Read more about Kyla's story and her tips for others like her.
Laura's experience with urinary tract infections (UTIs) was limited. She'd only had two UTIs before, but her third was different. It did not fully respond to antibiotics and her symptoms returned within days to weeks after each prescribed treatment. She went through the usual process of referrals and investigative tests and found no answers. After reading information online about chronic UTI, she knew instantly this is what she had. She met with a new GP who thought it was likely she had a chronic UTI and agreed to treat her. Months into her new treatment regimen, Laura had a video consult with a leading chronic UTI doctor in London and they decided upon working with her existing GP to continue her treatment. Nine months in, Laura is almost back to her old self and is looking forward to finishing her treatment. You can read more about Laura's success below.
Michele developed a septic UTI at the age of 21. This was the start of nearly three decades of recurrent UTIs, persistent UTI symptoms, negative tests, positive tests, doctors' appointment, invasive procedures and much ongoing pain and suffering for her. When she was searching online for explanations for her mysterious condition, Michele came across an online support group for people with embedded, chronic UTIs. This was an important turning point that led her to find other women who were being treated by a chronic UTI specialist in the United Kingdom and, a little later, another based in the United States. Michele consulted with both doctors in person. With just over a year of treatment, she can now lead a normal life and says she hasn't felt this good in years. Read more about Michele's chronic UTI story.
Alicia's first ever urinary tract infection (UTI) struck in the middle of the night. She knew something was terribly wrong, but doctors at her local hospital in Spain looked at the negative dipstick and sent her home with some cream. As the weeks went on, Alicia's suffering intensified and so did her search for answers. After a multitude of doctors, tests and procedures, and trying to manage work and family while her physical and mental health deteriorated, she learnt about a clinic in nearby England specialising in diagnosing and treating patients with complicated UTIs and other urinary symptoms. She decided she had nothing more to lose and booked an appointment in the hope she had a treatable infection that her doctors had missed. Read how Alicia was eventually diagnosed with a chronic UTI.