Laura R’s Chronic UTI Story

07 Jan Laura R’s Chronic UTI Story

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.

My UTIs were normal until my third experience

I’ve only ever experienced three UTIs in my life. The first two, I experienced the ‘usual’ symptoms—burning, frequency, urgency. Always promptly resolved with antibiotics. But the third was different. In October of 2019, I experienced frequency and urgency, but no burning. I took myself to the GP where I gave a mid-stream urine (MSU) sample as requested, and was given a five day course of Trimethoprim. My MSU came back negative to bacteria, but as my symptoms seemed to have abated, I didn’t think much of it.

Three weeks later, the frequency and urgency were back. And worse. Back to the GP, this time the MSU cultured both E.coli and Enterococcus; the latter of which was resistant to Trimethoprim. I was given a different antibiotic this time that both bacteria had shown sensitivity to. But by day six on this antibiotic, I started experiencing pain in the bladder. I went to a different GP as it was a Sunday, and was told to just keep taking the antibiotics, even though I only had enough for one more day. The following day I went back to my usual GP and he rang the lab that tested my urine. They advised another antibiotic, this time for two weeks. But within two days of finishing the antibiotics, the pain was back. This happened again and again for about two months. I had ultrasounds on my kidneys and bladder that showed nothing abnormal, as well as an MRI that came back normal too. Eventually, I was directed to go to the hospital for IV antibiotics—this was a week before Christmas 2019. At this point I was terrified that I had a ‘super bug’ that couldn’t be killed, but the doctors at the hospital assured me that it was ‘just a little bug’ that could be easily killed.

They advised another antibiotic, this time for two weeks. But within two days of finishing the antibiotics, the pain was back. This happened again and again for about two months.

After IV antibiotics my UTI symptoms returned again

After the IV antibiotics I felt okay for two weeks. But then the pain in the bladder came back. It was excruciating and would worsen as my bladder filled throughout the day. I was confused—the doctors at the hospital were so convinced that they had cured me.

I am big on research, which I know drives some doctors crazy, but it is my health and I have to take ownership of it. Over the next two days I started googling ‘UTI that won’t go away’. Eventually my reading took me to the Chronic UTI Australia website. There I learned about embedded UTI and the work of Professor Malone-Lee.

I went to my GP armed with printed information, which he promised to read, and as a first step he suggested another MSU. I did a ‘first catch’ sample instead, as advised by Professor Malone-Lee (to identify infection signals, not for culturing). And no surprises, my old friends E.coli and Enterococcus were found, along with high white blood cell (WBC) counts and epithelial cell counts. He gave me another antibiotic and said that I must have interstitial cystitis (IC), and that I would need to see a urologist, begin prophylactic antibiotics and probably have a cystoscopy. I asked him if he had read the information on embedded UTI and he said he’d only read one or two pages, and it was the same as how a urologist here would treat it. I explained that Professor Malone-Lee says that prophylactics aren’t strong enough to kill embedded UTI and instead lead to resistance; that instead he uses full dose, first generation, narrow spectrum antibiotics on a long term basis until it’s eradicated. I could see his face turn pale and he started muttering “oh no, no, we can’t do that…” as he printed off a referral to the urologist.

I was referred to a urologist who was clearly not up-to-date with chronic UTI research

In early February, I went to a urologist. She was a very sympathetic lady, but she scoffed and laughed when I mentioned Professor Malone-Lee. I was taken aback by her close-mindedness and arrogance that she knew better than a renowned expert. She prescribed me a tremendous range of antibiotics to take, ending with a six week course of prophylactics. I told her I didn’t want to take these; that I knew they would lead to resistance. She replied, “oh no, resistance only happens when you don’t take the full course”. I pointed out that a prophylactic course is in essence not taking the full course, to which she had no response. I left there feeling frustrated and angry. Why wouldn’t anyone listen to an expert who has successfully treated so many who have suffered from this? I knew that I would NOT be going back to see her again, which turned out to be a huge shame when I realised that I had left my favourite umbrella in her lobby!

Back at work the next day, a colleague suggested that I try another GP—one in a private billing practice nearby. I had a prior relationship with her through work, and I knew her to be a very intelligent and open minded woman.

My new GP was fully onboard and wanted to help treat my chronic UTI properly 

I printed off information from the Chronic UTI Australia website and from the Chronic and Recurrent UTI chat group (Australia and New Zealand) again and a week after seeing the urologist, off I went. She listened with great empathy to my story and promised to read the files. As a first step, she suggested an immediate sample done at a Douglass Hanly Moir lab at Macquarie Park in Sydney. The next day I drove there, bladder absolutely bursting for two hours in horrific Sydney traffic! My new GP rang me two days later with the results—19 WBCs and high epithelial cells. She told me to stop taking the prophylactic course of the antibiotics I was on; to instead take a full dose and come back to the surgery to put together a plan. She HAD read the entire file of information that I had given her and accepted embedded UTI as my diagnosis! I cried with relief that I had found a doctor willing to engage with the research and expertise of the Professor! She gave me multiple repeats for the antibiotic that I have had the most success with and about a million urine sample pots! She asked me to do regular urine tests to track my WBCs and epithelial cells, always ringing me with the results.

This was in March when we were advised to stay home due to COVID-19, so I stopped driving to Macquarie Park and instead found a Douglass Hanly Moir drop off in my town. I asked them what was the earliest time that their courier comes, so I always do a fresh ‘first catch’ sample at 8am and take it down to them before the courier comes at 8:30. This way, the sample arrives at the lab fairly quickly. My counts have usually matched my symptoms (and if I don’t sleep well the night before, my counts are ALWAYS worse!)

I cried with relief that I had found a doctor willing to engage with the research and expertise of the Professor! She gave me multiple repeats for the antibiotic that I have had the most success with and about a million urine sample pots! She asked me to do regular urine tests to track my WBCs and epithelial cells, always ringing me with the results months.

I had a video consult with an expert doctor at the Chronic UTI Clinic in London 

Next came my silver lining due to COVID—I managed to secure an appointment in May with Professor Malone-Lee, which he agreed to conduct online because I was unable to leave Australia due to border restrictions. I was placed under the care of Dr Kiren Gill (obstetrician/gynaecologist), who is a wonderfully warm and sympathetic doctor.  She asked me so many questions to gauge the severity of my symptoms and my responses to different treatments. She decided to keep me on the antibiotic that my new GP put me on, adding in Hiprex and a tonne of  vitamin C. This treatment plan was emailed to my GP, and she was very happy that we had the experts working with us!

Once on the antibiotics and Hiprex combined, I’ve had only a few minor flares. Most of the time I am completely symptom free, which I attribute to my quick self-diagnosis of embedded UTI and finding a GP who prescribed the correct treatment. I’ve experienced lots of thrush (which I have NEVER experienced before and found it almost as bad as the chronic UTI in terms of symptoms!), but am keeping that at bay with compounded boric acid pessaries, as advised by the Professor. I also take zinc, probiotics, prebiotics and ensure that I get enough vitamin D and sleep; doing everything I can to support my immune system’s fight.

Nine months into treatment and I’m almost my old self

I’m now nine months into treatment and feeling really great; for the past month or two I have had zero symptoms. Dr Gill wants to trial me coming off antibiotics soon, I just need to endure traffic to get another immediate sample done to see where my counts are now!

My treatment may end up being shorter than many other sufferers face because I was diagnosed and treated quickly. Dr Gill told me that the average amount of time that it takes for patients to discover the Professor and his team is SIX YEARS! From the very first UTI symptoms to treatment, it only took four months for me.

I’ve found that whenever I do intensive cardio I always have really high epithelial cell counts. So in order to try and shorten my recovery time, I’m trying to do plenty of exercise whilst on antibiotics in the hope that when infected epithelial cells are shed and the bacteria release, they can be killed off by the antibiotics in the urine before having a chance to re-infect new cells.

My tips

• Do your research. I can’t imagine where I would be if I hadn’t found the Chronic UTI Australia website. I am eternally grateful to the tireless efforts of those who have made and update the site. You have legitimately saved me years of misdiagnosis, suffering and mistreatment!
• Inform and educate as many people as you can about embedded UTI so that we can help more sufferers. I tell anyone who will listen what has happened to me in the hope that someday they might be able to share my story and diagnosis with someone else suffering from the same horrific illness.
• Find an excellent GP, whatever it costs or takes. I am so grateful for my new GP’s intelligence, empathy, humility and open mindedness! If someone tells you no, then keep looking until you find someone who says yes. This is your health; you have to be willing to fight for yourself!
• Work alongside the Professor’s team. They will give you your life back and you just can’t put a price on that.

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Disclaimer:  Stories or case studies in relation to personal experiences with chronic urinary tract infection, and links to other websites, are included for convenience and information only and do not constitute a recommendation or endorsement by Chronic UTI Australia of materials in those stories or on those linked websites, or any associated entity, product or service. We have not screened, nor conducted background checks or other investigations in relation to those third parties or the information they supply for inclusion on this website.  You should seek assistance from a health care professional when interpreting the materials available on this website and applying them to your individual circumstances. If you have any concerns about your health, consult your general practitioner. This blog is subject to the Chronic UTI Australia website’s Terms of Use.

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