07 Mar Julie C’s Chronic UTI StoryReading Time: 8 minutes
After frequent international travel for work, Julie developed a series of complex symptoms that were badly impacting her health. Her symptoms were put down to an auto-immune condition that she had to live with. Six years on she developed further symptoms – this time relating to her bladder. Her doctors explored and treated several problems that were identified, but her bladder symptoms persisted. After eight years of managing bladder pain and incapacitating reduced capacity and frequency, and undergoing various disappointing treatments, she decided to use her academic skills to find a proper solution. She consulted with an Australian urologist who recommended she read ‘Cystitis Unmasked’ by the late Professor James Malone-Lee. They both agreed she would trial a treatment for chronic bladder infections. Within weeks, Julie’s bladder symptoms started to vanish and her life finally took to a turn for the better. Read more about Julie’s journey to reclaim her health.
My problems began with some complex and confusing health issues
It’s hard to say when my bladder problems really started. I had been working in China and travelling frequently when I found myself back in Australia but debilitated by some kind of autoimmune condition. During 2007 I had shingles, pneumonia twice, various gastro problems and I ended up with some kind of chronic fatigue which included painful muscle weakness. Over the next few years, I saw a multitude of different specialists as new symptoms took over then subsided only to be replaced by some other problem. Except for an allergy to sunlight (UVa and UVb) my tests all returned mostly normal results. My health problems were lumped together under the label ‘lupus like condition with solar urticaria.’
By 2013, I was referred to an uro-gynaecologist because of repeated UTIs, painful pap smears and difficulty urinating. I was frequently in agony, unable to sit or travel. I couldn’t make it through a one hour work meeting without excruciating pain forcing me to scurry to the bathroom. In the worst flare ups, I slept kneeling on a towel while leaning on the bed, needing to urinate five or six times an hour. I was exhausted and deeply depressed. More than once, I seriously thought about suicide.
My bladder symptoms were diagnosed as interstitial cystitis/painful bladder syndrome
Slowly, however, my various symptoms were unravelled and diagnosed: Cystoscopy showed an intensely irritated bladder, especially after hydro distention. My bladder capacity was greater afterwards, up to 400mls so I thought hydro distention was a success (spoiler alert: it wasn’t). Peri-menopause and multiple prolapses (bladder, small intestine and bowel) were causing the vaginal and urination issues. Latent TB (tuberculosis) was thought to be causing an inflammatory response. Turns out I also had a malignant kidney tumour. I did the surgeries and the chemo. But my bladder problems persisted, with my capacity slowly reducing. My diagnosis was IC (interstitial cystitis), painful bladder syndrome (PBS), probably as a result of an auto-immune malfunction.
I tried iAluRil® installations and found them soothing for a day or two, but the problems always returned. I was being treated by caring and knowledgeable experts but I had few options available for treatment. Being allergic to sunlight was hard to live with but manageable. Having a bladder which was permanently in a flare was debilitating. It’s hard to convey the nature of the pain to anyone who hasn’t experienced cystitis. Repeated cystoscopies didn’t improve my condition and these procedures returned no useful results except to show that my bladder was becoming harder and smaller. The future did not look promising: Botox, and possibly self-catheterisation loomed.
My bladder problems persisted, with my capacity slowly reducing. My diagnosis was interstitial cystitis/painful bladder syndrome, probably as a result of an auto-immune malfunction.
I decided to use my academic skills to solve my ongoing health problems
In 2019 I decided that I needed to take a scientific approach to my health. I have a PhD in political science and I decided to use my academic research skills and critical thinking abilities to look at my health as a problem to be solved. I started with the pain, which by this stage was pelvis wide and a deeply disturbing nerve pain. I began to observe and chart the nature of the pain and realised a few things: how I felt – my emotional state – had a big impact on the pain. Not only that, but the pain seemed to run from under my ribs down to my left big toe. Digestion affected the pain, too.
I actively sought physical therapy – acupuncture, shiatsu, osteopathy, deep massage, gentle massage. Once the nerves higher up in my back were manipulated, the pelvic pain diminished.
I observed that I urinated more freely and with less pain and hesitancy when I squatted so I started squatting over a bedpan. And I started charting my fluid input and output. My aim was to find patterns of symptoms and behaviours. Like a scientist, I needed to gather as much data as possible before solving this problem. Wondering about why squatting felt so right, I used the internet find out about hypertonic pelvic floor muscles. This was crucial as I had always believed that my muscles were too loose and that was a cause of my problems. Actually, quite the opposite was the case. There are yoga positions and stretches which work for tense pelvic floors. And pelvic floor physiotherapists have a huge repertoire of tricks and tips.
The pain continued, however, as did the frequency and urgency issues. I have peed in gardens, gutters, parks, on towels, in mugs, during video-conferences. For pain I tried low dose anti-depressants, different types of pain relief including acupuncture. I tried cannabis oil with and without THC (tetrahydrocannabinol). Then I discovered the natural cannabinoid, Palmitoylethanolamide (PEA). Available over the counter, this had an immediate and dramatic effect on my nerve pain.
I was in less pain but my symptoms still completely dominated my life; I was exhausted
Yet despite being in less pain most of the time, I was still unable to live a normal life. By this stage I was in the 14th year of my illness and the 8th year of bladder issues. I was exhausted, and it felt like the only time I truly rested was under anaesthetic. I dreaded having to go anywhere without quick access to a toilet – a meeting, a bus trip, the supermarket, the queue waiting to get off a plane. That’s when I discovered how pain is felt more intensely for those of us with a chronic pain condition that has become a syndrome. I learned that I needed to dial down my fear state and soothe my nerves. I found the wonderful Curable app which brings together factual research on chronic pain syndrome, patient stories, guided meditation, and writing activities all within a supportive online community. I learned that although pain is felt in the body, it is an artefact of the brain. Instead of feeling condemned by ‘it’s all in your mind, pain is imaginary” judgment, I found it empowering to discover that I could change my pain by changing my thinking and emotional state. Curable was brilliant at helping me step out of the confines of chronic pain.
But the bladder problems continued. I still couldn’t sleep through the night because of the need to urinate. My capacity was 160mls on a good day, 60mls on a bad day. By this time, the pandemic had hit and I could manage my bladder better because I worked from home and never went out. I had great data about fluids, pain, sleep, food and bowel movements. But I still had no effective treatment. And I had an unchanged overall diagnosis – interstitial cystitis due to an autoimmune condition. My autoimmune symptoms were also unchanged: inflammation, sun allergy, muscle pain. I decided to find some definitive answers. Specifically, I wanted to know if I had one particular AI disease – dermatomyositis.
Finally a diagnosis – a bladder infection that had gone untreated for over a decade
This is when the final piece of my health puzzle fell into my hands. The interstate neurologist I saw referred me to some different specialists. With fresh eyes on my condition, they revealed that my bladder was infected, and that my stomach inflammation was from the drugs I took to control my ‘autoimmune’ condition. And these facts turned my whole health story on its head.
I didn’t have an autoimmune system which had gone rogue and was out to hurt me. No, my immune system was struggling to deal with a persistent bladder infection that had gone untreated for over a decade. The cystoscopies and installations had only really ‘worked’ because I had taken antibiotics afterwards.
The concept of an embedded bladder infection was new to the urologist that I saw but I will always be thankful that she recommended that I read Cystitis Unmasked and prescribed a course of full strength antibiotics and a few scripts for prophylactic follow up. My bladder felt better straight away. But a few days after the full strength course finished, the familiar symptoms returned despite being on methenamine (Hiprex) and prophylactic antibiotics. I consulted Prof Malone-Lee’s book and I immediately returned to the full dose.
I didn’t have an autoimmune system which had gone rogue and was out to hurt me. No, my immune system was struggling to deal with a persistent bladder infection that had gone untreated for over a decade.
The treatment worked and my symptoms were vanishing
Success! Within two weeks my bladder capacity was at 500 to 600mls. I slept through the night for the first time in over a decade. I had very little pain and absolutely no ‘bladder awareness’- the horrible lurking feeling that all cystitis sufferers know well.
But with no symptoms and now seemingly ‘cured’ how could I convince a doctor to let me continue on full dose antibiotics for the lengthy period needed to eradicate this pesky infection? I continued with my scientific approach and I bought a microscope to monitor my body’s response to the antibiotic treatment, as explained in Cystitis Unmasked.
Each day I continue to gather data: no pain, 4 x 450-600ml urinations a day, a good night’s sleep. But each day I also see dozens or even hundreds of white blood cells and epithelial cells in my urine. I know the infection isn’t beaten yet. But now I have a plan.
What was helpful:
- Shiatsu and acupuncture for nerves and muscles
- Pelvic floor physiotherapy
- Curable app for chronic pain
- iUFlow fluid monitoring app
- A foldable camping mug for measuring urine when away from home
- PEA (Palmitoylethanolamide) for pain relief
- A microscope
What was essential:
- Cystitis Unmasked
- Antibiotics at full dose
I started this story by saying that I wasn’t sure when my bladder problems really began. After the chronic UTI (cUTI) diagnosis, my mum reminded me that, as an 11-year-old, I had suffered from repeated bladder infections. After a few painful interventions, I was put on a full strength antibiotic for 6 months to cure me. It worked. That was over 40 years ago.
So far, I have followed the Malone-Lee protocol for under four months. I have had some minor flares but I’ve stuck to the plan. And it’s working. I’m returning to a normal life.