chronic UTI Tag

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.

 

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.

 

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.

 

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. It is not unusual for the resources and strategies people previously used to cope with everyday life stressors to rapidly become overwhelmed, leaving people feeling lost, helpless, and hopeless. We tend not to talk about how experiencing a significant health condition increases people's vulnerability. Unfortunately, additional features associated with chronic pain and illness are loss and grief. When someone is chronically ill, they can be at risk of loss of employment, important relationships, and secure housing. They may also experience less tangible losses, such as a loss of identity, and of their hope and dreams for the future. In the struggle to ‘get better’, many patients are inadvertently traumatised, either through the struggle for an accurate diagnosis, through invasive and painful treatments, or through the implication that they may somehow be responsible for causing their condition. Is it any wonder then, that anxiety and depression are increasingly experienced by people with chronic UTI? We feel it is just as important for people to know about the mental health impacts of chronic pain and illness as it is to know about the physical impacts, and to be able to recognise when their physical ill-health is impacting their mental well-being so they can seek appropriate help.  The following article has been written by people who understand chronic UTI and the impact it can have on your mental health.  We hope you find it helpful.

  Please Note: Although we hope this is not the case, if reading this article induces negative thoughts relating to your health condition, we encourage you to seek support from family, friends, a trusted health professional or other familiar supports. If you are in crisis, please contact Lifeline on 13 11 14Beyond Blue on 1300 22 4636, the national Suicide Callback Service on tel:1300659467 or the relevant mental health support organisation in your country.

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.