The festive season is usually a time for love, happiness, fun, family, friends and food. When it comes to someone with a chronic UTI, it can also be the season for unwelcome UTI flare-ups. Flares occur when bacteria embedded in the bladder wall become active (planktonic) and start to multiply in the urine, resulting in increased symptoms. Flare-ups can be triggered by a variety of things—the most commonly reported being stress (good and bad), sex, vigorous exercise, internal gynaecological procedures, bowel movements, drinking alcohol and consuming certain foods that individuals are sensitive to. Christmastime should be added to the list because it seems to be an extremely common time to experience flares, no matter where you live in the world. To help minimise the risk of a flare-up ruining your holidays, we asked people with chronic UTI to share their best prevention tips. This is what they told us.
A simple bout of cystitis changed Michelle's life. She went from being a happy, productive member of society, to someone who suffered relentless UTI symptoms that prevented her from working, socialising with friends and family and having a normal sexual relationship with her partner. If that wasn't enough, she had become a burden to the healthcare system as well. She was quickly written-off by her specialists as being a depressed, menopausal woman with interstitial cystitis. Her diagnosis was terribly wrong and she knew it. Michelle kept digging and found a specialist who understands chronic, embedded urinary infections. After being properly diagnosed and treated for her hidden infection, she experienced relief within weeks. And after 11 months of continued treatment, she is completely symptom-free. You can read more about Michelle's chronic UTI story here.
After suffering from recurrent UTIs for 60 years, getting through each day had become unbearable for Wendy. Her recurrent UTIs had become so unmanageable, she was living in constant pain with urinary symptoms that had her visiting the toilet up to 50 times a day. Along with countless short-course and prophylactic antibiotics, she was offered treatments such as urethral stretches to help manage her symptoms. Wendy was eventually diagnosed with interstitial cystitis/painful bladder syndrome (IC/PBS) and told she would have to learn to live with her painful symptoms. By now, she was battling an ongoing cycle of vaginal thrush and living on pain killers to get through each day. By chance, she stumbled across a UTI specialist who was experienced in treating chronic infections. Within months of starting treatment, she was surprised to find herself symptom-free and once again participating in a life she thought she had lost. Wendy's swift recovery allowed her to return to her beloved lawn bowling competition and she is now competing at a County level. Find out more about Wendy's inspiring story here.
Craig had experienced a urinary tract infection (UTI) before. When he next noticed the tell-tale symptoms of bladder and urethral stinging and frequency, he was confident things would be sorted when he saw his doctor. Craig was wrong. Despite having clear UTI symptoms, his tests came back negative. Still suffering, he was referred to a sexual health clinic where blood and urine tests gave him a clean bill of health. Feeling desperate for relief, Craig introduced some home remedies while waiting for an appointment with a men's health specialist. In the meantime, he managed to see a doctor specialising in chronic and recurrent UTI and other urinary disorders, and was diagnosed with a UTI. After being properly treated, Craig's recovery was rapid. However, when he next experienced familiar UTI symptoms and another negative UTI test, his doctor opted to treat him for a urinary infection still and his symptoms resolved almost immediately. Knowing how greatly others suffer from chronic UTIs, Craig feels fortunate he was able to break the cycle early before his infection became engrained. He knows his outcome could have been completely different had his doctor continued to rely on UTI tests that were unable to identify his infection. You can read more about Craig's experience here.
Christine is a British woman whose recurrent UTIs started at the age of 12. Being prescribed the usual treatments, and offered routine UTI prevention tips and homeopathic remedies, her regular infections persisted. After complications brought on from successful breast cancer treatment, her recurring UTIs became worse and began dominating her life. Now out of options, Christine's practitioner referred her to a specialist clinic for recalcitrant UTIs based in London. Here she was diagnosed immediately with a chronic UTI. Her severe embedded UTI has required several changes in antibiotic therapy to bring her symptoms under control. Now that her infection is being properly managed and she's feeling better, she is cautiously optimist about completing treatment in the near future. You can read more about Christine's story here.
Evann Hilt is a young American scientist who has helped change the course of history. Working with an intelligent, tightknit group at the Loyola Urinary Education and Research Collaborative (LUEREC) in Chicago, USA, her work on the human bladder resulted in the 2014 ground-breaking discovery of the bladder microbiome—dubbed the female urinary microbiota (FUM). This discovery not only dispelled decades of incorrect assumptions that urine is sterile, but it also highlights fundamental flaws in urinary tract infection (UTI) diagnostic tests used throughout the world today. The existence of the FUM is forcing scientists, microbiologist and clinicians to re-think everything previously accepted about urinary tract health and disease, including what causes UTIs and how they are best diagnosed and treated. Evann’s important work now opens up life-changing possibilities for those living with UTIs and other urinary disorders. Although it could still be some time off, she anticipates her work will give clinicians new safe and effective non-antibiotic therapy options that will return the resident FUM to a healthy and harmonious state. You can read more about Evann's exciting research in our 2018 interview. (Above image: Dr Alan Wolfe and Evann Hilt analysing culture plates at the LUEREC lab, courtesy of LUEREC.)
Linsey is a nurse living in the United States. Her problems began at the age of 33 after developing a UTI that did not respond to three short-courses of antibiotics. Given no alternative but to live with severe bladder and urethral pain, her search led to a practitioner in her country who was able to order advanced diagnostic tests and finally treat her infection. During her healing she discovered she had other systemic infections, including Lyme disease. Addressing these additional infections was key to her recovery. Linsey has been symptom-free for the past two years, but says it is more important than ever to remain vigilant and take a holistic approach to her body and her health. You can read more about Linsey here.
When Lauren got her third UTI, she never imagined it would be the beginning of a gruelling 18-month journey taking her from one side of the world to the other, and then back again. What looked to be a straight forward bladder infection, quickly spiralled into the most frightening and miserable experience of her life. As her symptoms rapidly declined, so did her mental health as she was subjected to rounds of tests and medical procedures to explain her symptoms. After a lengthy process of elimination, Lauren was diagnosed in Australia with interstitial cystitis (IC) and started on a course of bladder instils. Refusing to accept this was her future, more research led her back to the United Kingdom. The day after her arrival, she was finally diagnosed correctly with a chronic UTI and prescribed a treatment plan for the infection that had become embedded in her bladder wall. After 22 months of continuous full-dose antibiotic treatment, Lauren completely recovered and is 18 months' symptom and medication free. You can read more about Lauren's chronic UTI journey here.
Olivia is a British woman whose battle with recurrent UTIs started decades ago. What first began as occasional, seemingly uncomplicated acute UTIs, eventually turned into frequent, severe recurrent attacks. When her acute attacks tested positive, she would receive the usual UTI treatment. When the tests failed to identify bacteria, she was abandoned by her doctors. After jumping through numerous medical hoops, being repeatedly offered derogatory advice and receiving painful surgical procedures that did more harm than good, Olivia eventually found a specialist who knew what was going on. She was finally diagnosed and treated for a chronic UTI. Olivia is a 'long hauler' and healing from her embedded bladder infection has been a test of endurance. After more than five years in treatment, she is ecstatic to finally be free from her UTI symptoms and looks forward to the day her treatment is complete. You can read more about Olivia's experience here.
Life changed for this Australian woman when a simple, uncomplicated urinary tract infection (UTI) refused to go away. Relying solely on tests results, doctors were quick to disassociate her symptoms from the initial infection and diagnose her with interstitial cystitis (IC). Following a post-operative course of antibiotics, Jenna had an unbelievable 14 year hiatus before her dreaded symptoms returned. Realising doctors knew very little about her condition, she decided she would find a way to get better. Her ongoing research highlighted similarities between her 'incurable' condition and other chronic infections. After plenty of reading and research, she decided to trial a treatment protocol used to target pathogens linked with several other conditions. This unconventional, self-administered protocol quickly led to relief from her ongoing urinary symptoms. In little over a year, Jenna was able to stop her treatment completely and remain symptom-free. You can read more about Jenna's experience here.