01 Feb Emma’s Chronic UTI StoryReading Time: 8 minutes
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.
It began with a UTI and a misdiagnosis
I remember when I was like any other ‘normal’ 21-year-old. I was at university completing my bachelor’s degree, working part-time and having fun with my friends. One morning I woke up and my life was never the same again.
I had all the textbook symptoms of a urinary tract infection (UTI); excruciating pain with urination, voiding and never feeling like I could fully empty my bladder. I went to my General Practitioner (GP) and was given the typical UTI treatment, only for my symptoms to return after the full course of antibiotics was completed. I then had many urine cultures and most of the results came back negative to bacteria. This became a constant pattern over the next two years until I pushed my GP to refer me to a urologist.
The urologist believed I did not have an infection and diagnosed me with interstitial cystitis (IC). The diagnosis came after having a cystoscopy with hydro-dilatation which showed inflammation in my trigone area and ‘bumpy tissue’. Later I found out the ‘bumpy tissue’ can be quite normal. IC is a chronic inflammatory bladder condition with no known cure. I was sent away with no medications, no support and told to investigate managing my stress—or what I like to call it ‘I was told it was all in my head’.
For 10 years I suffered daily pain, a multitude of band-aid therapies and then tragedy
For the next 10 years I was in chronic pain every day. I worked with a gynaecologist to help manage my symptoms with hormones as my pain was often worse during different stages of my cycle. I was placed on antispasmodics, pain medications, anti-inflammatories and told to follow the IC diet. All the medications did have their place and gave relief to me, but I could never trust my body to behave when I needed it to the most. I feel all these treatments were a band-aid therapy more than a cure or a long-term treatment. I saw a pelvic floor specialist and she was fantastic! I was taught to relax my muscles which is a technique I still use today. I found myself at the emergency department many times and I wonder now why I didn’t push for more help then. But at the time, I was so scared if I pushed I would be left unsupported and branded a ‘pain medication seeker’.
In 2017 hubby and I decided to start a family. I was extremely nervous to be in chronic pain during my pregnancy and the thought of being in so much pain when our baby was born made me extremely anxious. We got pregnant very quickly, but a couple of weeks into my pregnancy I experienced heavy bleeding. I was eventually diagnosed with placenta previa which is a condition where the placenta is low lying and covers the cervix. I was hospitalised due to the heavy bleeding and the baby’s amniotic fluid being incredibly low. I became very sick in hospital and I was treated for an infection in my uterus via IV antibiotics. Unfortunately, the inflammation from the infection had already set in and I went into premature labour at 21 weeks. Our baby boy was stillborn, we called him Eli.
I found myself at the emergency department many times and I wonder now why I didn’t push for more help then. But at the time, I was so scared if I pushed I would be left unsupported and branded a ‘pain medication seeker’.
My personal tragedy fuelled my recovery
The emotions I experienced are hard to describe, but what happened next was driven from the sadness and anger I felt. Working with a grief physiologist helped me to become strong enough to do what I needed to do to become my own advocate for my health. Tests revealed I had a high CRP level (a blood test that shows infection or inflammation in the body). The most likely explanation was I had an undiagnosed infection which caused inflammation that ruptured the membrane around our baby boy, forcing my body into premature labour. However, the test results did not reveal what bacteria was present.
I wasn’t getting anywhere with my current GP who I had been seeing since I was a baby, so I decided to find a new GP and start fresh. I had been watching a live IC Support Group session with Jill Osborne on Facebook and she was talking about next generation DNA sequencing to look for urinary bacteria. I asked her a few questions and she provided the information I required to take to my new GP to discuss having the test sent to me in Australia. My obstetrician and GP supported me having the testing, so I ordered it from America, and it was sent to me in Tasmania.
The DNA analysis tests* identify thousands of different pathogens that are often missed with standard urine culture tests used in clinical labs to diagnose UTIs. My results showed I had an overgrowth of good bacteria, a very resistant Escherichia coli (E. coli), high level of Mycoplasma and an Enterococcus infection. Now, some doctors in Australia will tell you that ‘everyone will show Mycoplasma when tested for it’. But because of my decade-long urinary symptoms, the loss of our baby boy due to infection and tests showing my body was continuing to fight some type of infection, if there was bacteria in my bladder that I could treat, I wanted that treatment—regardless of what was classified as ‘normal’.
The most likely explanation was I had an undiagnosed infection which caused inflammation that ruptured the membrane around our baby boy, forcing my body into premature labour.
My wonderful doctors listened and agreed to help treat my chronic UTI
Reluctant to repeat the same routine of short-term courses of antibiotics which only gave me temporary relief, I found another support group for people suffering from chronic UTI in Australia and New Zealand on Facebook. They were discussing a professor based in the United Kingdom who had developed a protocol using long-term, full dose antibiotics to treat patients with chronic, embedded UTI. There were information sheets available and I took them to my GP and obstetrician to discuss contacting the professor directly to work with him and to be placed on his protocol.
Professor James Malone-Lee is an Emeritus Professor of Medicine at the University College London, who believes embedded infections are the cause of most cases of chronic lower urinary tract symptoms (LUTS). Standard urine culture tests are known through research to leave 80 percent of these infections undetected. The Professor runs a specialist UTI clinic in London and diagnoses chronic UTIs based on symptoms and looking at cells in a fresh, unspun urine sample. His treatment of an extended course of antibiotics ensures the embedded infection is cleared from the shedding layers of the bladder wall.
I took the information to my GP and she contacted Professor Malone-Lee who was only too happy to give her a copy of his protocol to follow and gave his advice for my treatment. Using the next generation DNA sequencing results and Professor Malone-Lee’s treatment protocol, my GP worked out the correct antibiotics for me to start with. It was a combination of two antibiotics as the infections I had weren’t sensitive to the same antibiotic. I was so surprised at how quickly my pain and frequency improved. Within a few months I had more pain free days than ever before. I became pregnant within a few months of my treatment and was placed on safe antibiotics during my pregnancy. My obstetrician and GP monitored my CRP levels and supported me at every stage of my pregnancy. In May 2019 I gave birth to our healthy baby girl, Florence.
My life today is transformed
Today, I am still on my treatment while I am breastfeeding and I am reducing my antibiotics over the next year. I am mostly symptom free and I have stopped all pain medications. My treatment was put together from a combination of the DNA sequencing test results and Professor Malone-Lee’s chronic UTI treatment protocol. If you asked Professor Malone-Lee, he isn’t keen on DNA sequencing testing for chronic UTI, but I felt this was the correct approach for me.
My best advice is, if you aren’t happy with the care you are receiving from your doctor, please find a new one who will listen to you and work with you. I wasted so much time, money and put my trust into doctors who weren’t up to date with knowledge of the significant failures of standard UTI tests, or the newer tests and treatments for people like me with a chronic, embedded UTI. I saw many specialists and doctors who were patronising and this left me misdiagnosed and in daily pain for over a decade. Through the sad loss of our baby boy Eli, I paid the ultimate price for accepting the pain I was in was my ‘new normal’.
If this sounds like you, keep pushing, keep reading and keep researching, as the knowledge you will gain is your biggest tool moving forward with your recovery.
What has been important in my recovery
My grief psychologist—who gave me the confidence, strength and courage to advocate for my own health.
My pelvic floor specialist—who gave me techniques to relax tight and painful pelvic muscles caused by the chronic infection (I still use these techniques today).
The chronic UTI community—online peer-to-peer support which provided valuable information, understanding and support.
MicroGen DX DNA testing—which identified urinary bacteria that standard culture tests failed to find, leading to my doctors believing me.
Professor James Malone-Lee—who shared his chronic UTI treatment protocol with my doctors and generously answered their questions along the way.
A supportive GP and obstetrician—who really paid attention to my symptoms, treated me with respect, listened to the information I brought to them and went out of their way to treat my infection outside standard treatment guidelines for UTI. Standard guidelines doctors use to diagnose and treat UTIs had already failed me and left me living in pain for 10 years and caused me and my husband terrible sadness and grief.
*There is no consensus in the scientific community on the value of DNA-based molecular testing in diagnosing chronic UTI. Some UTI research experts are critical due to the current lack of understanding of the urinary microbiome and the inability to conclusively identify and describe the microbes responsible for health and disease. We do accept that people improve under the care of practitioners who employ DNA testing to help guide treatment. Therefore, it may be best used by experienced practitioners in conjunction with the patient’s history, symptoms and other tests. As part of your own research into treatment options, please ask for evidence that a practitioner has experience and success using this approach and the cost involved in repeat testing. In Australia, anecdotal reports so far show difficulties for people finding practitioners who understand the test results, and more importantly, have specialist knowledge in treating chronic UTI. The repeat testing some treatment protocols require could be considered cost-prohibitive by many. Although it is still early days, it is hoped that DNA-based molecular testing will one day allow the identification of a personalised healthy urinary microbiome and inform future treatment options for UTI. You can read more about UTI testing here. To read our 2018 interview with US research scientist Evann Hilt from Loyola University, please click here.