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.
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.
Chronic UTI Australia will shortly launch ‘Hearing Patient Voices’—a confidential online survey of people who have been diagnosed with a chronic urinary tract infection (UTI) or who suspect they have a chronic UTI. The survey is designed to capture the quality of life impacts of the condition on various domains of life and is open to people from all countries. Participating in this survey will strengthen our understanding of patients' experiences and contribute greatly to our work in raising awareness and recognition of chronic UTI among health professionals and policy makers. Read more about the 'Hearing Patient Voices' survey here.
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.
Jane was diagnosed with interstitial cystitis (IC) after having persistent UTI symptoms that her doctor put down to over active bladder (OAB) and possibly gynae problems. Despite the shock diagnosis, she discovered her symptoms miraculously disappeared when she took a long course of antibiotics and she remained well for another 10 years. She was distraught when her UTI symptoms returned, so she sought treatment from a chronic UTI specialist. There was gradual improvement on long-term, full dose antibiotics, but her recovery really accelerated when she was diagnosed with vaginal atrophy and began localised oestrogen and then systemic hormone replacement therapy (HRT). Read more about Jane's recovery here.
At the age of five or six, Bella knew there was something different about her. Her bladder often hurt and she could not control the urgent need to race to the toilet frequently. This led to 'accidents', unsympathetic teachers, teasing kids and doctors who misunderstood the cause and the severity of her condition. Her unrelenting urinary symptoms had shaped her entire life. In her early 20s, her symptoms had become markedly worse. Newly married and with the encouragement and support of her husband, she flew to the United Kingdom to attend a chronic UTI clinic. To her relief, she was diagnosed and treated for a UTI that had plagued her for her entire life. After five months of constant antibiotic treatment, Bella cannot believe how much her symptoms have reduced and how good she feels for the first time. Now that she is receiving a treatment designed specifically for her condition, she knows she will be fully cured in time. She is looking forward to living a normal life and she is excited that some day she and her husband will start a family—something she feared might never happen. Read Bella's story here.