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interstitial cystitis Tag

19 Nov

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.

 
16:28 / Stories
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07 Mar

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.

 
08:28 / Stories
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07 Mar

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.

 
08:24 / Interviews
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05 Dec

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.
09:35 / Information
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05 Dec

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.

09:30 / Stories
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03 Sep

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.

 
07:08 / Stories
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04 Jun

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.

 
07:12 / Stories
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07 Jan

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.

 
08:17 / Stories
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01 Oct

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.

07:32 / Stories
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01 Feb

At just 21, Emma failed to fully respond to a course of antibiotics for a UTI.  Once her treatment was finished, her symptoms returned.  Negative tests eventually led her to being diagnosed with an incurable urinary condition 'interstitial cystitis', years of daily pain and the devastating loss of  her baby boy at 21 weeks' gestation.   Through the support of a grief counsellor, Emma gained the courage to advocate for her own health and she started to question her diagnosis.  Now believing she had been misdiagnosed a decade ago, she urged her doctors to consider the possibility she could be suffering a chronic, embedded urinary tract infection (UTI).  After further research, her doctors agreed and began treating her infection.  Within months, her symptoms started to ease and she was pregnant again!   Emma shares her bittersweet chronic UTI story here with the sincere hope it helps others like her.

11:18 / Stories
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