While on summer holidays, a simple UTI was the start of a horrid year of illness, pain and anxiety for British woman, Clare. Short-courses of antibiotics quickly cleared her UTI symptoms, but they returned each time. Repeat dipsticks and culture tests confused her doctors because they were unable to confirm an infection was present. Being a nurse practitioner and understanding her symptoms and her own body, she knew an infection was what she was dealing with. Clare was referred through the healthcare system, had the usual tests and was offered many of the standard treatments for managing her symptoms. Before embarking on this route, she found a specialist with the expert knowledge to diagnose her condition and treat the infection that had become embedded in her bladder. This is Clare's story.
To be diagnosed with a chronic UTI in Australia is no mean feat. Chronic UTI is a largely unrecognised and misunderstood condition. It is common for people with these chronic infections (who are predominantly women) to be referred through the medical system—sometimes for years and even decades. They see numerous specialists and have multiple tests, often walking away with a urinary syndrome diagnosis. Ongoing symptoms and pain management is usually the best that can be offered. For these people, the future can be bleak. This month we talk to five Australian women who have long-suffering UTI histories of between one and 35 years. Through their perseverance, each of these women found their way off the medical merry-go-round and were finally diagnosed and properly treated for a chronic UTI. Read more to find out how they reclaimed their lives and found their way back to health.
Alison was in her mid-20s when she was struck with her first UTI. A standard three-day antibiotic treatment cleared her symptoms, but they returned soon after ... and were much more serious. Unbeknown to her, Alison's bladder infection had ascended to her kidneys and had become life-threatening. With little forewarning, she was hospitalised numerous times with sudden acute attacks of pyelonephritis and sepsis. Each stint in hospital meant weeks of recovery time at home. Alison's mum knew it was not normal for a young, active woman to have become so suddenly vulnerable and seriously ill. Through a GP friend, she learnt about a UTI specialist in London and booked an appointment for her daughter immediately. Alison and her mother are both sharing their compelling story.
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.
Jenny is a young Italian woman who was suddenly struck with a streptococcus infection causing acute bladder and vaginal pain and burning. Despite being treated, and tests confirming the infection had cleared, her symptoms worsened and her health was in decline. After a year she was diagnosed with vulvodynia and fibromyalgia and prescribed a treatment that took the edge off her symptoms. Feeling despair and let down by standard medical treatments that left her still extremely unwell, she turned to a dietician who introduced her to a natural approach to healing systemic body inflammation and strengthen the immune system. A year on, Jenny no longer suffers her dreadful symptoms and is back to leading a normal life. You can read more about Jenny's experience here.
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.
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.
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. Ten months later, Lauren has her life back—she is virtually symptom free and feeling excited about completing her treatment in the coming months. You can read more about Lauren's chronic UTI journey here.