13 May Anna’s Chronic UTI Story
Anna is an Australian woman with a history of recurrent UTIs spanning 30 years. Her infections were more an inconvenience than a problem—providing she received treatment quickly. Over time, she would require a second course of antibiotics to fully clear her symptoms. She followed all the advice given by doctors and drank large volumes of water to ‘flush’ the infections through. It was when her UTI tests started to come back negative, that doctors wrongly concluded there was no infection and no treatment required. With her infection left untreated, and home remedies bringing no relief, her condition naturally worsened. By now, her painful symptoms had taken over her life. Left with no other viable option in Australia, she travelled abroad to see a physician specialising in UTIs. It was here that she was diagnosed with a chronic UTI and finally started on an appropriate treatment for her embedded infection—two and a half years after its onset. Read her story here.
My UTI history is not overly unusual
My UTI history dates back to my teenage years. My infections were occasional but they were always related to sex. In fact, my first sexual experience resulted in my first ever UTI. I don’t think my UTI history is overly unusual. My tests always came back positive and I always responded quickly to the antibiotics prescribed.
Doctors told me I was just one of those women who were ‘prone’ to bladder infections and I could try some strategies to avoid them. I was advised to drink lots of water at the very first sign to ‘flush’ the infection through. I did everything recommended and managed those occasional UTIs. Whenever I had a bladder infection, doctors were always kind and understanding. Most would write a repeat prescription to take if necessary, but I never needed the repeat in those early years.
Fourteen years after my first ever UTI, I had my first infection that didn’t fully respond to the course of antibiotics. My symptoms lingered, but further culture testing reported the infection had been successfully treated. After months of ongoing, lingering symptoms, I was referred to a urologist who began routine testing. Days before my second appointment my symptoms had escalated and I now had a full-on, acute UTI and weeing blood. The urologist rushed me through for a cystoscopy the following morning. He concluded I had a severe bladder infection and prescribed antibiotics.
Doctors told me I was just one of those women who were ‘prone’ to bladder infections and I could try some strategies to avoid them. I was advised to drink lots of water at the very first sign to ‘flush’ the infection through. I did everything recommended and managed those occasional UTIs.
I was put on prophylactic antibiotics to prevent further bladder infections
As it turned out, my infection was resistant to those antibiotics and several days later I was to take a different antibiotic. This was followed by a three-month prophylactic course of Macrodantin to prevent a re-occurrence. After the change in antibiotics, my acute symptoms responded quickly. After the prophylactic course was complete, I was left with some mild intermittent symptoms and was reassured it was ok because it takes time for the bladder to fully recover after a bad infection. A follow-up culture confirmed the infection had been successfully treated. I was happy with that and thought the urologist was a hero. When I asked why all the other tests hadn’t picked up the infection, the urologist said I must have had a low grade infection that snuck under the radar for those few months. After this ordeal was over, I decided to take cranberry tablets for about a year to help prevent any further infections.
More UTIs and then I discovered D-mannose
Over the next eight years I had a few occasional UTIs—they always seem to be related to sex, but it wasn’t a problem. Then one day I had a bad infection that didn’t fully respond to a double course of antibiotics. Even though I still had symptoms, the cultures reported the infection was gone. I was referred again to the same specialist who had helped me those years earlier. He wasn’t as nice as I had remembered. Not only did he seem disinterested in my situation and my negative tests, he came across as being slightly irritated. He didn’t remember seeing me and said my records had been archived and he wasn’t able to access them. Even though frequency was just one of my symptoms, his solution was to trial a drug for overactive bladder. I did, and this didn’t help.
My UTI symptoms continued on and off over about a year. I had lost faith in the urologist. My GP suggested I try a natural supplement called D-mannose. This turned out to be a life saver. It took some time, but my symptoms gradually resolved. When I’d get occasional niggly UTI symptoms, one or two days of D-mannose would soon fix things. During this time I still had a couple of acute UTIs that tested positive and responded well to antibiotics. But between these acute episodes, D-mannose did the trick.
One day I had a bad infection that didn’t fully respond to a double course of antibiotics. Even though I still had symptoms, the cultures reported the infection was gone.
Another new UTI, lots of water and negative tests
Four years on, I had an acute UTI that D-mannose could not manage. After trying to flush it through for several days, I finally saw the doctor and gave her a very diluted sample. The doctor’s dipstick did not pick up an infection and she was sceptical. She sent a sample for culturing and I was told to await the results. Two days later, I was informed by the clinic nurse there was no infection and it was left at that.
My symptoms became worse over the next month. In desperation, I saw a different GP. She dipsticked my sample and confirmed there and then that I certainly had a UTI. She prescribed empirical antibiotics and sent off a sample for culturing. My symptoms did not improve much in those first few days of treatment. I was then informed by the clinic that no infection was found and to stop taking the antibiotics if they weren’t helping
It was left at that and I was given no direction or alternative options. Over the next few months my symptoms became even worse. It had progressed beyond the point of having acute UTI symptoms. I now had horrible pelvic pain and intense bladder pressure—like I had a rock lodged firmly in my lower abdomen—along with lower back ache and awful constant burning inside my bladder and bladder neck.
Back to the urologist and even more doctors
At some point I was referred to a new urologist. He was nice and compassionate towards me, but it felt like he was only interested in performing a cystoscopy so he could officially diagnose me with ‘painful bladder syndrome’. He said they didn’t really understand painful bladder syndrome and no treatments he could offer had great success rates. He stressed that any treatment would be completely my choice and to go home and research my options. I appreciated his honesty and being treated with respect, but I knew we weren’t on the same page.
I refused to believe the nonsense explanations I was being told by the experts. I didn’t accept the auto-immune theory that my body had suddenly decided to attack my bladder. That didn’t make logical sense. What made sense was I had an infection that the tests couldn’t pick up, like what had happened years earlier. I mentioned this to the doctors and specialists I saw, but they didn’t agree. Since having negative tests, doctors were treating me differently. They were not kind and sympathetic like when infection showed up in my previous tests. I could see they were starting to doubt me. Instead of focusing on my symptoms, they wanted to ask questions about what I was eating and stress in my life.
Reading and online research led me to information about embedded bladder infections
I had started my own research by this time. I found information on occult bacterial infections of the bladder. I was very lucky to find a group of women online who were patients of two doctors in the UK. From this group I began learning, researching further and sharing information with other women. I had gathered all my previous urine test reports and I started looking and finding signs of infection that had been considered irrelevant. I read all the studies and papers I could get my hands on. I was slow at learning the science, but I persisted. By now I was convinced I had an occult, embedded bladder infection. The only diagnosis and treatment in the world for such an infection was being offered by two doctors in the UK and a nurse practitioner in the US.
Off to the United Kingdom to see a world-leading specialist
I decided to go and see a world-leading urinary infection specialist in the UK. I realise travelling to the other side of the world to see a doctor was an extreme thing to do, but that’s all I had left.
At my appointment the specialist asked for a fresh, undiluted urine sample which he looked at straight away under his microscope. He was looking for signs of infection, in particular white blood cells and epithelial cells. He then listened closely to my UTI history and asked lots of questions about my symptoms. Unlike all the other doctors I had seen in Australia, he seemed interested in my symptoms. He then performed a physical examination which was quick and not invasive.
The specialist diagnosed me with a chronic UTI and said it had probably been laying low for many years. He started my treatment immediately, which involves taking antibiotics and a urinary antiseptic (Hiprex can be bought over the counter in Australia) for quite an extended period. My treatment would be monitored by keeping a close eye on my symptoms and by checking and plotting my urinary white blood cells and epithelial cells. I had managed to organise for this to be done locally. The specialist would also communicate with my local GP and follow my progress. I was very lucky that my GP was so supportive and agreed to help with this unconventional approach.
The specialist diagnosed me with a chronic UTI and said it had probably been laying low for many years. He started my treatment immediately, which involves taking antibiotics and a urinary antiseptic (Hiprex can be bought over the counter in Australia) for quite an extended period.
Improvement was gradual, but things were on the up
It took eight months, and just one change in antibiotics, before I noticed ANY improvement with my symptoms. However, by monitoring my urinary cells we could see I was responding to the treatment long before this. It’s expected that the improvement of symptoms lags behind the clearance of urinary cells. I have now been on treatment for my chronic UTI for 14 months and my journey is not yet over. I can report that I’m now 80 percent better. My infection has been reduced considerably and I’m no longer suffering as I was. I still have some intermittent urinary symptoms, but I know this happens when infected bladder wall cells shed and the offending bacteria become active. Even though my symptoms have improved enormously, I still have a way to go. If these infections remain undiagnosed and untreated over a long time, they can become deeply embedded into the layers of the bladder wall. This means treatment can take a long time. Although being treated with long-term antibiotics is not what we all wish for, and many people disapprove, it’s necessary and is currently the only treatment available for people like me with a chronic, embedded UTI.
I understand travelling overseas for help may not be possible for everyone and I sympathise with those who can’t following this option. We desperately need a specialist here in Australia who is educated and trained in diagnosing and treating chronic UTIs.
Update (February 2019)
Anna reports she is still on her treatment. She has dropped one antibiotic, and remains on a combination of one antibiotic and Hiprex. She has had one unsuccessful attempt to stop treatment. She has not yet reached zero white blood cells and epithelial cells (which is one of the treatment goals), but her numbers remain very low while on treatment. She continues to have intermittent days of symptoms which she describes as ‘mild’ compared to her symptoms at the height of her infection. She speculates she is still some way off completing her treatment, but has come to terms that it can take a long time for some people when treating an embedded infection that has been with you for years.
I've learnt to be selective in who I tell about my chronic UTI and my treatment. I found early on that friends and family, and some health professionals, can be quite judgemental and freely express their opinions without knowing the facts. For this reason, I get support (when I need to) from the online chronic UTI community.
- If you have UTI symptoms and your tests come back negative, it doesn’t mean you don’t have an infection. MSU culturing is insensitive and misses infection 50 percent of the time. Most GPs don’t know this.
- Get copies of your UTI test results and look for signs of infection that might have been ignored.
- Learn all you can about chronic UTI. There are some good websites around now with lots of quality information. Teach yourself and share what you learn with your doctor.
- Find a GP who is willing to help you explore and treat your chronic UTI. If your normal GP won’t help you, keep searching until you find one who will.
- Don’t be a victim. Be proactive, persistent, determined and don’t give up until you find something that makes sense!
- Remember, chronic UTIs take a long, long time to treat. Once you’ve chosen the right treatment for you, whether it’s through antibiotics or naturals, stick with it. It’s going to take time and patience.
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Claire WPosted at 09:48h, 07 March
Could you tell me which doctor you saw here in the uk please? I’d like to see him too.
Chronic UTI AustraliaPosted at 17:33h, 20 March
Hello Claire, this blog author travelled to London to see Professor James Malone-Lee. You can find contact details on this page (the second to last dot point): https://www.chronicutiaustralia.org.au/chronic-uti/what-to-do-if-you-think-you-have-a-chronic-uti/
Patricia JPosted at 10:00h, 31 July
Hello Anna. Like you I have suffered from Chronic UTIs for about 4 years now. Although I have had them in the past, a course of antibiotics cleared them up. Then in 2007 I had a prolapse operation where the surgeon used the Johnson and Johnson mesh. Approximately 2014 I moved to Coffs Harbour, NSW and saw a gynaecologist and over the course of the next year I had 3 prolapse operations to fix the same problem. He also tried to take the mesh out which had cut through into my bowel. In the end I ended up having a Le Fort. Sadly all of the operations were a disaster and not done properly. From then on I was having a UTI every few weeks. I moved to the Central Coast and found a lovely new Doctor who tried me in various antibiotics but the minute I stopped taking them within a week I had another UTI. I saw a urologist who put me on a course of 3 antibiotics for 3 months but the minute I stopped my UTI came back. In the meantime, like you, I started researching and found a website of a doctor in Harley Street and although I didn’t go over to the UK I watched him being interviewed on YouTube. His name is Prof. James Malone-Lee. He has written a book called Cystitis Unmasked so I bought a copy. It’s hard reading but makes a lot of sense. I realised reading the book that I definitely have embedded UTIs. He said that he always puts patients on a course of first generation antibiotics and Hiprex for at least a year. Then I went to see another gynaecologist in Sydney who was lovely and she had been to lectures by Prof Malone and agrees with what he says. So now I am permanently on Macrodantin for at least a year. Although I don’t like taking antibiotics for too long my gynaecologist is happy for me to. Let’s face it having UTIs all of the time is debilitating so feeling well taking an antibiotic is a plus. Thank you for your story.
Chronic UTI AustraliaPosted at 21:53h, 15 August
Hi Patricia, thanks so much for sharing your story. We wish you the best of luck with your treatment. Please email us if you’d like to connect with others in the chronic UTI community https://www.chronicutiaustralia.org.au/contact/