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.
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.
Coby was familiar with having the occasional acute UTI, just like many of her female friends. She started to worry though when her recurrent UTIs increased in frequency. Just weeks after completing a prophylactic course of antibiotics, she developed a serious kidney infection. Reluctant to be stuck in a never ending cycle of pain and back-to-back short course antibiotics, she was determined to find a different approach to stop her infections. When her urologist mentioned other patients reported good results with D-mannose, she decided to give it a try. Within six months her recurrent UTIs were gone. Almost seven years on, she feels confident and empowered that the treatment she stumbled upon has broken her recurrent UTI cycle for good. She realises not everyone with recurrent and chronic UTI has the same success with D-mannose, but she wants to reach as many people as she can in the hope it works for others as well as it has worked for her. You can read more about Coby's experience with D-mannose here, along with a link to her information website.
Carrie had only ever had a urinary tract infection (UTI) once before. When she was 40, her second UTI refused to budge and her life soon became a revolving door of doctors and ER visits. Suffering terrible bladder and urethral pain and becoming increasingly unwell, she battled to hold herself together and manage her day-to-day life with three small children. Carrie knew her original infection had never fully cleared and it had become an infection like no other. She researched until came across a different form of testing and a doctor in the United States who was prepared to see past the negative culture tests and treat her for a chronic, embedded UTI. She is now close to being symptom-free and is back to living life as a happy, busy wife and mother. Read how Carrie fought her way back to good health.
Naomi is a young Canadian woman who experienced her first UTI at the age of 19. Following typical antibiotic treatment, she was left with vague UTI symptoms that became an unwelcome daily companion. Within the following year, her symptoms gradually escalated into bi-monthly acute UTI attacks. Naomi's doctor found an antibiotic solution that quickly brought her infections under control, but she was unsure how to stop the recurrent UTIs from striking at random and dominating her life. While being treated by a popular Calgary acupuncturist for unrelated back pain, the practitioner suggested acupuncture might help her recurrent UTIs as well. Naomi, now aged 29, felt she had nothing to lose and started acupuncture treatment targeting her urinary tract in January 2019. She reports she has not had an acute UTI, or required antibiotics, in almost a year. You can read more about Naomi's acupuncture experience here.