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.
Thousands of hearts around the world broke at the news of Professor James Malone-Lee’s passing in the early hours of Saturday morning after a short illness forced his retirement from researching urinary tract infections (UTI) and treating patients.
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 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.