IC/PBS 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.

 

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.

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.

 

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.

 

Jane was diagnosed with interstitial cystitis (IC) after having persistent UTI symptoms that her doctor put down to over active bladder (OAB) and possibly gynae problems.  Despite the shock diagnosis, she discovered her symptoms miraculously disappeared when she took a long course of antibiotics and she remained well for another 10 years.  She was distraught when her UTI symptoms returned, so she sought treatment from a chronic UTI specialist.  There was gradual improvement on long-term, full dose antibiotics, but her recovery really accelerated when she was diagnosed with vaginal atrophy and began localised oestrogen and then systemic hormone replacement therapy (HRT).  Read more about Jane's recovery here.

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.

Elle suffered chronic pelvic pain. By the time she was 25, investigations left her with diagnoses of irritable bowel syndrome (IBS), stage III endometriosis, general anxiety disorder and interstitial cystitis (IC). Even though she had never noticed bladder symptoms during this time, she was treated daily with Elmiron. Two years into her treatment, like a bolt from the blue she woke to crippling, stabbing bladder pain, abdominal pain, bladder burning and frequent, urgent urination. These symptoms never left and she had nowhere to turn. Since she was never convinced of her original IC diagnosis, she started to research other possibilities. Being in Canada, she was able to access a more sophisticated urine test and a practitioner who has a history of successfully treating patients with low grade, chronic bladder infections. After eight months of treatment targeting her infection, she says she is well on her way to being healed. You can read more of Elle’s story here.