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 14, Beyond Blue on 1300 22 4636, the national Suicide Callback Service on tel:1300659467 or the relevant mental health support organisation in your country.
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.
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.