Carly was 21 when she had her first UTI. She was treated with antibiotics and a week later her symptoms were back. This pattern continued. Her doctor believed each episode was a new infection but she wasn't so sure. She decided to take to the internet to learn more. She first heard about Hiprex when reading through some chronic UTI websites and decided to buy some and give it a go. After 10 months taking Hiprex daily, along with a three-month trial on antibiotics, she feels completely well and is excited to be planning her wedding.
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.
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.
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.
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.
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.