If I could start this process again I would do it differently… Obviously, I would choose a body that had a magical force field against recurrent urinary tract infections.
And maybe one that was a little more tolerant of food, and also possibly one that wasn’t prone to being in between clothing sizes for every brand that ever existed.
But you know what they say… Hindsight is 20/20.
As it turns out, I was really good at getting UTIs. If getting UTIs was a desirable skill, I nailed that skill for almost five years, with barely a break.
“When I look back at my experience with recurrent urinary tract infections, I have flashbacks of traumatic moments followed by lingering anxiety about when the next one would hit me.”
I had my first UTI at 23. The after-hours doctor asked, ‘Are you sure you don’t have your period?’ – clearly unaware of the danger created by patronising a female in the midst of a UTI.
I managed to stay calm and suppress the urge to retort, ‘You think I can’t tell the difference between my period and blood coming out of my urethra??’ (But seriously, really?).
All I wanted was something to fix the pain, and for them to leave my sight immediately. They delivered in both respects.
The antibiotics worked within a few hours and I never thought about it again… Until nine years later.
Recurrent Urinary Tract Infections Hit Hard
I was going through a stressful relationship breakup, and selling my business, and was completely run down.
The UTI hit me fast. The pain was just as intense as I remembered, but I didn’t panic quite as much as the first time. I knew I’d get antibiotics when I showed up at the emergency room.
Plus, I didn’t have time to think about it. Life was way too hectic for me to put any energy towards my health.
Again, the antibiotics worked and I dismissed it. But the symptoms crept back. A month later I was at a friend’s farm when it got so bad I had to make a run for the hospital.
Driving more than an hour was too much for me and I ended up squatting on the side of a dangerous road in the dark more than once.
“Recurrent urinary tract infections had officially become a part of my life, though I had no idea of this at time.”
The thing is, when it first hits you, it’s out of the blue, and you never imagine this is going to be your life now. You take antibiotics, it goes away, you’re generally healthy, so chances are it was just an anomaly.
Even the second or third time can seem like a bit of a coincidence. The words ‘recurrent urinary tract infections’ don’t really register at this stage. You figure you just haven’t been sleeping enough, or maybe you’ve been fighting a virus and your immune system is just having a rough time.
Denial is probably the most accurate word for this phase. I was just so certain the antibiotics would work every time. Even though they didn’t.
Selling my business and packing up my life for a move overseas was my priority, and the frequent trips to the doctor for antibiotics were more of a nuisance than cause for concern.
“I thought I was being responsible when I asked my doctor for antibiotics to take abroad with me ‘in case I got another UTI’. That optimism is almost laughable now.”
Recurrent Urinary Tract Infections In Every Port
A trip to the UK (from Australia) resulted in a UTI the day before my 30 hour flight home. I managed to get a single dose antibiotic from a walk-in clinic, but was still cracking sweats by the time I got to the airport.
I armed myself with water, demanded an aisle seat, and proceeded to drink water nonstop. I was using the bathroom every 20 minutes, like clockwork, and by the time I landed for my stopover in Hong Kong 13 hours later, I really thought I was on top of it.
How wrong I was. I boarded my flight for Sydney, and over the next 10 hours descended into fevers, chills, shakes and a little delirium.
At Sydney airport I missed my onward flight to Melbourne and broke down at the customer service desk. I barely remember stowing my bag in a locker and wandering around looking for help.
Fortunately, I was able to find the airport doctor, who prescribed antibiotics and anti-nausea pills.
I had forfeited my flight, but I didn’t care. I eventually made it home to Melbourne, a full 35 hours after the start of my journey, where I passed out for 20 hours. My body was defeated.
“Here’s where my life started to become broken into modules, based on UTIs.”
Like, ‘Which trip was that? Oh the one where I had the UTI when we were camping and I had to keep going outside in the cold to pee near that weird herd of sheep.’
Or, ‘Was that March or April? It must have been March, because I had that UTI at the same time as my period and food poisoning and it was my sister’s birthday and I had to call her between vomiting and peeing blood.’
I know it’s gruesome, but that’s exactly what I want to illustrate. Just how recurrent urinary tract infections can become an everyday thing. Even though they hurt just as much, every single time.
So three or four UTIs later I was living in a village in Greece. And when I say village, imagine a handful of houses on a hillside by the sea, hours from the nearest hospital.
And when I say houses, imagine a tiny, lovely, concrete box, with an outdoor bathroom beside an olive tree. It was a truly amazing, traditional experience, and I loved every minute of it – between UTIs.
I sat on the toilet in that outdoor bathroom for a few hours at a time, debating whether to take the antibiotics I had brought with me and wondering whether my kidneys were actually disintegrating and coming out through my urethra.
Maybe my body needed to fight this on its own to get better? Maybe I would die in a remote village and my parents would have to expatriate my body.
The internet told me if there was blood in my urine, my kidneys were affected and I HAD to take antibiotics. So I took them. I didn’t die in a little village in the middle of nowhere and I didn’t even tell my parents how close they had come to organising an international funeral.
I was alive, but I wasn’t well.
Recurrent Urinary Tract Infections & Lifestyle Changes
My symptoms seemed to hang around. I took drastic action and cut all sugar and processed carbs from my diet. I was running and swimming every day. I felt amazing aside from the constant threat of the next UTI.
After three months in Greece it was time to move to Berlin. I packed my bags, making sure to take those UTIs with me…
I became acquainted with the German healthcare system pretty quickly. I found a doctor who was willing to give me antibiotics whenever I got a UTI, and an extra prescription so I could self-administer them next time.
He also sent my urine to a lab a number of times. Every time we’d get the results it would show raised leukocyte levels, and ‘insignificant’ levels of bacteria, but generally nothing to report.
“So, according to the lab, I didn’t have a UTI. According to what I knew about my own body, I did, and it would not go away.”
I started researching and bringing information to my doctor about other organisms I wanted to get tested for. He was happy to comply. He didn’t know what else to do to help me.
Still the results were inconclusive.
By this time, I was around 18 months in. I was really starting to lose my patience and my sanity. I tried different doctors. Same deal. They did tests. And while they were sure I had an infection, they didn’t know what was causing it.
I was completely uninformed about testing, and why it wasn’t helping me figure this out.
On another trip home to Australia, I got a UTI between Berlin and London and missed my flight from London to Singapore. Instead I spent some quality time at a London hospital.
I’m eternally grateful to the amazing British Airways staff member who managed to get me a new flight without penalty. But I was completely fed up.
I Refused To Accept UTIs As My Future
It’s not in my nature to learn to deal with something that I know shouldn’t be. There is no way my body is built to crumble at the first hint of sex, or fatigue, or dehydration. I’ve always been stronger than that.
I’m pretty good at knowing exactly what is happening in my body and when. I’ve accurately diagnosed myself with injuries that have taken years to show up in scans. I’m my very own body whisperer.
So when something like this happens, it’s a virtual kick in the guts, or more specifically, the bladder.
“Getting a UTI every few weeks or months doesn’t give you much breathing room to feel human. To get things done.”
There is a constant shadow hanging over you. Restaurant and bar reconnaissance isn’t about people anymore. It’s about toilets. You learn to scope out any venue for its bathrooms. At any given moment, I could tell you where the nearest public toilet was.
I never went anywhere without a remedy in my bag. For me, that meant carrying antibiotics 24 hours a day.
Holiday planning came with underlying anxiety, and relationships – don’t even get me started on how recurrent urinary tract infections impact those.
Too late… I’m on a roll.
Sex becomes a source of anxiety. You’re constantly calculating the probability of getting a UTI each time. Talk about a buzz kill.
Then afterwards, you do your best to leave it a respectable amount of time before you jump up and head to bathroom to flush your urinary tract. Sexy. Post-sex contented snuggling is NOT a thing when you have recurrent UTIs.
I’m terrified now to think how close I came to giving up. I’m not even sure what that would have meant. UTIs forever? With each episode a little sooner than last time?
“One doctor suggested I ‘might just have irritable bladder or interstitial cystitis’. Such a throwaway comment, like it’s a minor nuisance or just one of those things.”
I knew that in their mind that was a life sentence, and I refused to accept it. It was a wake up call.
Recurrent UTIs: The Final Frontier
All the remedies and regimens I had tried weren’t committed enough. So I tried harder. I took more of everything.
I’d been fighting this for 3.5 years. Keeping my life together and keeping up appearances. I even managed to travel to the Balkans to volunteer for a few months. Sarajevo was the turning point.
I like to think of it as the final frontier. I got a UTI that never went away. The symptoms stayed with me despite taking a longer course of two different types of antibiotics. Antibiotics were done for me.
“Without finding out what was causing my UTI, I knew there was little chance of finding the right antibiotic and I wasn’t willing to continue taking them without being better informed.”
My body was suffering. It had become sensitive to everything.
I would get itchy daily, have yeast infections constantly, my digestion was shot and my contraceptive pill had ceased to control my cycle. I felt like a complete mess.
So I stopped taking antibiotics.
For me this was like taking a deep breath and jumping from a cliff into the sea, without knowing if I could really swim.
Being a pragmatic type of person, I got a range of blood tests to check my general health and discovered I was quite low in a few essential nutrients.
I also stopped taking the contraceptive pill, forever.
I emphasize this because quitting the pill felt momentous at the time. I had been on the pill since I was 16. Not for contraception then, but because I had periods so heavy I ended up severely anemic and required treatment.
Later, the pill became convenient for other reasons. I didn’t want to worry about irregular, heavy periods, but I also didn’t want to get pregnant, so the pill allowed me to live a life fairly free from those concerns.
My problems with the pill started around the same time as my recurrent urinary tract infections. The antibiotics I was taking meant my gut flora took a serious hit. I was getting yeast infections all the time and my periods started breaking through mid-cycle.
A gynecologist I saw suggested the pill I was on just wasn’t right for me and prescribed me another, then another. They didn’t help, and my unpredictable cycles continued.
Soon, I also broke out in a fairly controlled rash on my leg. More like a small patch of excruciating itchiness.
By some miracle, I was given an appointment with a trainee doctor in Berlin who identified the rash as part of a bigger problem – a possible candida overgrowth – aggravated by my frequent antibiotic use and the estrogen in my contraceptive pill.
She managed to convince me, by sharing her own experiences, to go off the pill. This was terrifying to me at the time. I imagined the heavy periods returning, and all that came with that, including the possibility of babies.
“But I was done making excuses for myself. I was ready to take control of my health.”
I created a regimen of strong herbal anti-fungals and antibacterials based on the advice of that doctor, then teamed them up with specific probiotics, and vitamins and minerals targeting my deficiencies.
I had tried all of these separately (minus the vitamins and minerals) after reading studies about each of them. But I had never tried them together, or with a plan and a timeframe in mind.
I started my new regimen.
The UTI Treatment Regimen
Now, I don’t know about you, but I love a good spreadsheet. And it’s amazing how much more fulfilling a health regimen can be when you plot it out, then mark off your progress daily. Feels so goooood.
I also downloaded a counter on my phone to track how many days since my last UTI – at the very least I would see how long I could last between episodes.
Every morning I woke up and looked at my counter. After 30 days I started to feel my first glimmer of hope. I was still getting twinges and minor symptoms, but nothing I couldn’t handle.
My first milestone came around that time, when I went hiking with my partner. Without a map, without a compass, and without enough water. We got lost. We were out there for 10 hours and I was dehydrated.
But I didn’t get a UTI. And I didn’t even think about it until I was home safe again. That alone blew my mind. This thing that had been on my mind for almost four years had somehow become an afterthought.
The counter kept going up. 45 days, 60 days, 90 days since a UTI. I suddenly felt like declaring myself officially healed of recurrent UTIs at the six month point might not be so far-fetched.
Sometime, around three months in, I had a relapse of symptoms and upped my regimen in response. That UTI never happened and my count remained intact.
Six months came and went and I set my sights on a year UTI free.
In case you’re curious, the process of correcting my gut flora, changing my diet and addressing my deficiencies had resulted in a super regular and almost symptom-free menstrual cycle.
Oh, and as another side note, the process also cleared up my yeast infections, and 90% healed my long term digestive issues. But that’s another story!
Now back to the UTIs…
Out of fear, leftover antibiotics had become a permanent feature in my bag. If I changed bags, the antibiotics came with me. I never opened them, but they were my psychological backup.
“Around the nine month mark I made the momentous decision to leave the antibiotics behind. It might sound overly dramatic, but tearing up your safety blanket and tossing it to the wind IS huge.”
When I embarked on my healing regimen, I envisioned massive celebrations at the one year mark, for I would then be officially free of recurrent urinary tract infections. In reality, I had put UTIs so far behind me that it was almost a non-event.
I did have some celebratory drinks, with an emphasis on the fact I COULD drink alcohol without fearing a UTI.
Which reminds me. I still have that counter. At the time of publication, I am 625 days UTI free. But it’s no longer important. I keep it as a memento of what I went through, and what it took to get past it.
Recurrent Urinary Tract Infections Are More Common Than You Think
Even after I broke the cycle of recurrent urinary tract infections, I never stopped researching. I’d been full circle through wondering what was wrong with me, to wondering what was wrong with doctors, to being furious at yet another female health issue overlooked by the healthcare industry, to wanting to do something about it.
And here we are.
Every study I read led me to another study. I gained a much clearer picture of recurrent urinary tract infections and chronic cystitis and why there is no standard approach to diagnosis and treatment.
I learned that although my tests kept coming back negative, I did in fact have an infection – it was the test that was flawed. The standard UTI test has always been flawed, and has been proven over and over again to be inadequate in diagnosing UTIs.
I reached out to others who know what recurrent urinary tract infections feel like. They have had me in hysterics as they recounted their now funny UTI stories in an interview.
Catching the train for 45 minutes in UTI-induced agony only to then resort to peeing in the front garden with the key in the door. So close!
Or getting approached by the police for suspicious behaviour resembling a drug deal, when all that was really happening was frantic clawing at a box of antibiotics. It turns out the police will back off quickly if they know a UTI is involved.
Then of course there is the infuriating side of this. The side that has left so many females feeling helpless.
The urologist whose best advice was that his own wife drinks aloe vera juice to help with her recurrent urinary tract infections. What the?
The many doctors and specialists who have said there’s nothing we can do about it, ‘some women just get recurrent urinary tract infections,’ and ‘it’s just your plumbing.’
Inspired and frustrated by the similarities I heard from all these stories, I gathered a team around me so we could speak to even more people.Then we started speaking to doctors, and researchers, and pieced together what we found.
The rest of my story exists within this website.
Our aim is to provide the most complete source of recurrent UTI and chronic cystitis information available. We’re only part of the way there, but we’ll continue adding new research as we find it.
We hope to lift others out of the murky waters of misinformation and empower them towards their own recovery.
You can help us by sharing your story.
Share your questions and comments below, or get in touch with your own story.