01 Mar Bella’s Chronic UTI StoryReading Time: 11 minutes
At the age of five or six, Bella knew there was something different about her. Her bladder often hurt and she could not control the urgent need to race to the toilet frequently. This led to ‘accidents’, unsympathetic teachers, teasing kids and doctors who misunderstood the cause and the severity of her condition. Her unrelenting urinary symptoms had shaped her entire life. In her early 20s, her symptoms had become markedly worse. Newly married and with the encouragement and support of her husband, she flew to the United Kingdom to attend a chronic UTI clinic. To her relief, she was diagnosed and treated for a UTI that had plagued her for her entire life. After five months of constant antibiotic treatment, Bella cannot believe how much her symptoms have reduced and how good she feels for the first time. Now that she is receiving a treatment designed specifically for her condition, she knows she will be fully cured in time. She is looking forward to living a normal life and she is excited that some day she and her husband will start a family—something she feared might never happen. Read Bella’s story here.
My bladder symptoms started when I was a young child
For as long as I can remember I have always been aware of my bladder. When I was six years old and in school, if I didn’t go to the toilet every 30 minutes the pressure would build, the urgency increasing, until it was unbearable. I’d have to ask my teacher to go to the toilet, yet again. I remember feeling embarrassed because, unlike the other children, I was unable to hold my bladder in class. The teacher would often make comments about my frequency, catching the other students’ attention and causing them to tease me. This highlighted to me at an early age that I was different. I knew I shouldn’t have to urinate as often as I did, but much to my despair, I simply couldn’t help it. One time I even tried to hold my bladder until recess to avoid getting told off, but I ended up wetting myself in class, getting teased, told off and sent home.
The teacher reported my constant need to go to the toilet to my parents. My parents took me to a doctor. The doctor went over the basics, wiping front to back and standing up and down a few times when using the toilet to properly empty the bladder. I then had a renal ultrasound done and all my issues were put down to small kidneys and poor toilet hygiene—which, in hindsight, I’ve got to say my toilet hygiene had become impeccable for a child my age. But unable to advocate for myself, my parents accepted this as the cause of my problems.
By the time I was in high school I had been suffering this condition almost constantly. I experienced little relief between flares, and I had extended periods when the intensity of my symptoms would increase. My parents didn’t take me back to the doctors as their general approach to healthcare was more through naturopaths. They also still harvested the belief that my frequency was due to my small kidneys and there was nothing that could be done for that. Not knowing any better, I shared their belief.
The teacher would often make comments about my frequency, catching the other students’ attention and causing them to tease me. This highlighted to me at an early age that I was different.
How my symptoms impacted my teenage years
Having this condition really affected me during adolescence. I would often miss out on activities I really wanted to do, such as school camps. I knew I wouldn’t be able to hold my bladder between toilet stops. And I feared getting a flare-up of my other symptoms, which included burning and pain during urination, a constant and relentless need to urinate but only being able to urinate a few drops at a time, as well as an intense burning sensation running up and down my urethra.
When I was in year eight, I was that desperate to go on the school camp (which was a seven-hour bus trip away) that I even asked my mum if I would be able to get a catheter put it. This is a small tube that goes up the urethra streaming urine directly into a urine bag that would be attached to my leg. I figured I could hide it under my pants so my friends wouldn’t know. I begged her because I thought surely if there was a bag collecting urine for me, I wouldn’t even have to try and pee and risk being in pain anymore. I remember seeing how uncomfortable she looked to be discussing the topic with me and her replying, “oh you don’t want one of those”, and quickly changing the subject. Her quick dismissal reinforced to me that this is just an issue abnormal to people, and that I probably shouldn’t talk about it as it had made my own mum appear uncomfortable.
Desperate to find some relief, but too embarrassed to open-up to people about what was going on, I tried to find ways to reduce the pain. I was heavily involved in sports during school, playing volleyball competitively, dance and regularly running cross country competitions. Unfortunately, I realised there was a correlation between my sporting activities and the onset of flares. Subsequently, by the time I was 16 I had dropped all sports. I also noticed I couldn’t tolerate any carbonated drinks, I couldn’t be in swimming pools at all, and any drinks containing caffeine, such as coffee or energy drinks, would set-off my symptoms.
Since I had to go to the toilet so frequently, but I often had no more than a few drops of urine coming out, I figured I would simply drink as much water as I could tolerate, and force myself to hold my bladder. That way, when I did go to the toilet, I would actually have some urine coming out. Much to my surprise, drinking excessive water (upwards of five litres each day) would reduce the intensity of my symptoms. However, this has led to the bad and dangerous habit of me drinking excessive amounts of water, often now over six litres a day.
At age sixteen I built up the confidence to go to my first doctor’s appointment alone to ask about my symptoms. The doctor did a urine test and told me I had a urinary tract infection (UTI) and he gave me a script for antibiotics. By the third day I couldn’t believe it—the pain I had felt my entire life had almost completely lifted! In that moment I felt perhaps I had been cured from the suffering my “small kidneys” had caused.
The dreaded cycle of short-course antibiotics and developing latrophobia
From this first encounter with the general practitioner (GP) who diagnosed my first UTI when I was 16, I got stuck in the dreaded cycle we all know too well. Mine went on for the next 10 years. I would get my period, or have an energy drink or coffee, or sit in a car for too long and my symptoms would return. I’d then go to any doctors’ clinic that could fit me in. I’d get a urine test (which always showed an infection), I’d be given antibiotics and I’d feel better for maybe a couple months. This pattern went on for maybe a year until my urine tests started coming back negative.
Once the tests started coming back negative, despite being in excruciating UTI pain, most GPs refused to prescribe antibiotics. This resulted in me going to numerous doctors to get antibiotics from any willing to treat my symptoms, regardless of a negative result. Although I would usually be able to find one that would give me a course of antibiotics, I would often cop condescending comments if I returned with another infection with another negative urine result. Doctors frequently suggested my symptoms was psychosomatic and I needed to stop being “so anxious”. They were often cold and unsympathetic and would give me some spiel about drinking cranberry juice and improving my personal hygiene and send me on my way. I remember just breaking down to one doctor and asked if there was someone I could see; was there any type of specialist that could help me? He reluctantly gave me a referral to a gynaecologist. The gynaecologist did a quick check over and reported back to my GP that there was nothing wrong with me. The GP was happy to patronisingly report this back to me. Had I been a bit older and wiser, I would have asked why he was sending me to a gynaecologist rather than a urologist to begin with.
One time I was unable to get antibiotics during a particularly painful flare and the infection ended up spreading to my kidneys. I ended up in hospital requiring intravenous antibiotics. This treatment by most GPs continued for almost 10 years and has left me with an intense phobia of going to the doctor. To this date, I see a psychologist to help with this. I guess the doctors were close, but wrong—my UTIs were not caused by anxiety; my anxiety was most certainly caused by the constant UTIs.
Doctors frequently suggested my symptoms was psychosomatic and I needed to stop being “so anxious”. They were often cold and unsympathetic and would give me some spiel about drinking cranberry juice and improving my personal hygiene and send me on my way.
Failed treatments continued to plague me
A few years after my negative experience with the gynaecologist, I did some research to see if there was another type of specialist that could help me. I had become engaged to my boyfriend and knew that without some serious help I wouldn’t be able to be intimate with my partner. I found a GP that was willing to refer me to a urologist. I was excited when the day came to finally see a urologist. I felt optimistic that she would be able to help me end the cycle of antibiotics. On the first meeting she really listened to me and decided to book me in for a cystoscopy under general anaesthetic in case anything needed to be removed from the bladder.
At my follow up appointment, the urologist explained to me she had found lumps of what looked like built up bacteria in my bladder and removed it. Great! I thought this had probably been my issue all along and now I was going to be cured forever. I got maybe one month’s relief before my symptoms returned. When I told my urologist, she was baffled. She too had thought, given my negative cultures and the removal of the lumps, that I would be cured. She suggested it would help me to be “a little more positive” and “less anxious” about getting UTIs. She also decided to do another cystoscopy to ensure my bladder had returned to a normal state after the previous procedure. The second cystoscopy confirmed what looked like a healthy bladder, but as I was still getting frequent UTIs, she decided to put me on a low-dose course of antibiotics.
About a year after the first cystoscopy, I found myself having weekly infections. Despite increasing the low-dose antibiotics slightly, I found myself on back-to-back courses of higher doses of antibiotics; now only managing a few days of relief in between. My infections had become worse than they ever were. I was completely, honestly, at the point where I could understand how people suffering these symptoms have decided to end it all. In a last bid of hope, I searched online to see if anyone had the same experience as me, and I stumbled across the Chronic UTI Australia website.
Finding a practitioner who could help me
After reading so many stories on the website, I kept noticing people talk about a professor in London who had helped them—Professor James Malone-Lee. I read so many similar experiences to my own, where people had seen this professor and had testing done that diagnosed them with a chronic, embedded UTI. My whole life I thought I had lived this condition in isolation, somewhat embarrassed and ashamed to have it. I had so much push back from doctors and specialist, who indicated they either felt it was psychosomatic or self-inflicted due to poor toilet hygiene.
I couldn’t believe there was a whole community full of people just like me—moreover people just like me who had been cured! I did as much research as I could on Professor James Malone-Lee and chronic UTIs / embedded UTIs. I read studies with treatment protocols using long-term, standard dose antibiotics that cured approximately 80 percent of patients. I also joined a couple of support groups on social media and found many Australians had flown to London to see this professor. It was there that I obtained an email address of the clinic in London and emailed them with my UTI history.
Much to my surprise, the Professor himself emailed me back, reassuring me that my story is one very similar to many he has heard from his patients. After years of being doubted by GPs, I now had a Professor of Medicine and a worldwide leading specialist in chronic UTIs, validating me. This encouraged me to find a GP (despite my fear of them) who would listen to the research and be willing to treat as per the Professor’s protocol, if they agreed I had a chronic UTI. Despite being lucky enough to find a compassionate and educated GP who would do so, I also felt I needed to go see the Professor in London to be tested for a chronic UTI. This was not only to support my GP, but I also wanted to ensure I had a specialist guiding my treatment.
However, the last straw that made me realise I had to see this professor was on my wedding night when I was unable to be intimate with my husband out of fear of making my UTI worse. This disease had impacted my entire life. I just wanted to feel somewhat human. When the opportunity came up to see a new doctor at the Professor’s clinic, Dr Sheela Swamy, I booked an appointment and jumped on the plane with the support of my husband. I had read many of the peer reviewed literature Dr Sheela Swamy had published on Google Scholar, and knew I would be in safe hands.
After years of being doubted by GPs, I now had a Professor of Medicine and a worldwide leading specialist in chronic UTIs, validating me.
Being diagnosed with a chronic UTI
Dr Swamy went through a comprehensive medical history, asking me many questions as part of my diagnosis. A urine sample was taken, but unlike Australian doctors, she checked the urine under a microscope immediately, counting white blood and epithelial cells. This was never done for me in Australia, despite many research articles verifying that standard midstream urine tests, the most common test GPs use to determine if a patient has a UTI, are widely unreliable. After the results, Dr Swamy informed me I did have a chronic UTI, and commenced me on a long-term, standard-dose antibiotic treatment, which I have been on since.
Since starting treatment in October 2019 (five months), my symptoms have reduced drastically. I haven’t had one single sick day at work. I can now be intimate with my husband and now I know I will someday be able to get pregnant. I can go swimming and not watch from the sidelines. I drink and can tolerate the occasional coffee. And most of all, I can see a future.
It is hard for me to relive my history and write down my story, but I feel it’s important if it can help just one person in this situation. Currently I am studying my Master of Public Health and intend on applying for a doctorate reviewing chronic health care within the public health care setting—with hopes of raising awareness and improving how chronic UTIs are treated within Australia.
My advice to others like me
I have made so many mistakes along my journey, purely from being young, naïve and misinformed. If I could give advice to anyone in this position, it would be:
- Stick to one trusted GP, educate them on embedded UTIs (Professor Malone-Lee and Dr Swamy have many peer reviewed articles available if you search on Google Scholar).
- If possible, fly to London and see the Professor or one of his colleagues. Unfortunately, much of the world hasn’t caught up to their research yet, making it hard to get a diagnosis and treatment.
- Please do your own research on cystoscopies and other invasive procedures before agreeing to them.
- Above all else, don’t doubt yourself. If you have this condition, the pain is not psychosomatic; anxiety is not the cause of your UTIs —the UTIs and the frequent dismissal by doctors may lead to anxiety. Please seek help if this occurs.
- Having a chronic illness can feel really isolating and be completely debilitating, there is nothing weak about asking for extra support. You are strong for what you have already been through!