How My Chronic UTI Started

It’s funny how a shared illness can bring people together, only for them to find out they have a lot more in common. That’s what happened with Geeves and I. Chronic UTI might be how we found each other, but it turns out that we’ve both spent much of the last decade traveling, and we love to work on the road.

Our new found blogger friendship has grown into a video interview series (more on that below) and the sharing of our stories on each others’ sites. 

“UTIs coupled with yeast infections threw my system into overdrive. I was moody, exhausted all the time, burning, itchy, and in pain every time I peed and even when I didn’t. It literally felt like my puss was on fire ya’ll. It was horrible.” Excerpt from Geeves’ story.

You all know Geeves, but who am I? For the purpose of this story, I’ll stick to the world of chronic UTI, and my place in it.

I started Live UTI Free, a global online resource for sufferers of recurrent and chronic urinary tract infection (chronic UTI). We’re connected with people all over the world, and we’ve heard thousands of their stories. 

I think I’ll begin there, and with the message that if you experience frequent or chronic UTI, you are not alone. Not only are you not alone, but it is possible to recover. It may not be an easy journey, but we often hear from people who have overcome their chronic symptoms, and are feeling more like themselves. 

In this blog, I’ll share…

• What is a UTI?
• How to Know if You Have a UTI
• How My Chronic UTI Journey Began
• How I Overcame My Chronic UTI for the First Time
• How to Find the Right Help
• The Cure For Chronic UTI Might Not Be Permanent
• Is it Really a UTI?
• My Endometriosis Diagnosis
• How to Be Taken Seriously

What Is A UTI?

I know, this might seem a bit basic for those who are well into the recurrent UTI journey, but when I think back to how it started for me, I remember how much it would have helped to understand the problem on a deeper level.

And let’s face it, sex education in schools doesn’t include much of the practical advice it should. For example, knowing that UTIs after sex is a thing, and precautions you can take would have been some great advice for many of us.

So, UTI 101 – A urinary tract infection is an infection that occurs anywhere along the urinary tract, which includes the urethra (the tube that allows pee to exit the body), the bladder, the ureters (the tubes that connect the kidneys to the bladder), and the kidneys.

It’s thought that UTIs typically start with the urethra, and that pathogens (organisms that can cause infection, such as bacteria) make their way upwards. If the infection reaches the ureters or kidneys, it’s considered an upper urinary tract infection. This comes with a risk of bacteremia, which means the bacteria have entered the blood circulating the body.

None of this is to scare anyone. But understanding the possible risks of UTI help to highlight how important it is to seek medical care if you think you have UTI symptoms.

[This post was originally posted October of 2021. Updated February of 2022]

How Do You Know If You Have Chronic UTI?

Something else I’ve learned is that each person’s experience of chronic UTI symptoms can be wildly different from the next. I’ve heard so many accounts that I find it hard to imagine a symptom I would consider unusual. 

The most common symptoms (the ones you’ll see listed on most websites) include blood in the urine, smelly and/or cloudy pee, and pain or burning during urination.

For anyone with more frequent UTIs, the symptoms might also evolve to include frequency, urgency, urinary incontinence, pain during sex, pelvic pressure, lower abdominal pain, urethral irritation and so many more. 

If you’re thinking your symptoms don’t match any of this, trust me, you’re still not alone. I can’t cover everything we’ve heard about here, but a few other reported symptoms include pain radiating down the legs, foot pain, mood changes, shoulder pain, headaches, bladder spasms, diarrhea, an escalation of symptoms at certain times of the menstrual cycle… I could go on!

And let’s not forget the symptoms of a kidney infection, which definitely shouldn’t be ignored! Things like upper back pain, side pain, nausea, vomiting, fever/chills or the shakes, could indicate that more than your bladder is involved.

Many people with recurrent UTI experience symptoms that never fully subside or return very frequently, and this can be a good indication that an embedded or chronic UTI could be present. 

Chronic or embedded means that the infection has established itself in the bladder wall and is not properly eradicated by treatment. Because the bacteria (or other organisms) causing the infection are not cleared from the bladder, they can continue to multiply, causing symptoms of a UTI over and over, or continuously for some people.

How My Chronic UTI Began

Now, back to my own experience. My classic UTI episode went a little something like this: I would feel ok one minute, then would suddenly know that I wasn’t fine, without being able to pinpoint exactly what was going wrong. I like to call it a sense of rising doom. I always knew that was the first sign of a UTI.

Next, I’d notice an ever so slight shift in my own smell. Once that change happened, my pee would also start to smell different. Within an hour of the rising doom I’d be peeing blood, with intense bladder spasms accompanying every trickle. Almost without fail, this process would be joined by abdominal bloating and diarrhea. 

Although usually fairly short lived in the beginning (3-4 hours), these episodes were intense and exhausting.

FACT

There are ZERO accurate standard testing options available.

Don’t Believe A Negative UTI Test

Doctors told me the same things they tell other women; that I was just prone to UTIs or that I just had to live with it. Amazingly, I was never told it was all in my head, though I know this is a go-to for some clinicians who have run out of other suggestions for the possible cause. 

One of the reasons they run out of ideas is because standard UTI testing is so inaccurate. Those little dipsticks used in clinics miss up to 80% of infections, and the culture they send your pee away for can miss up to 50%. 

These aren’t great odds. If you’ve received negative UTI test results even though you have symptoms, there are other avenues. You can read about more reliable UTI tests to get up to speed.

I went through this too. I can’t remember a single positive and helpful test result. Mine were always either negative, or marked as ‘mixed growth’ or ‘contamination’. Despite this, my doctors always prescribed an antibiotic. Blood in the urine isn’t something anyone wants responsibility for, and I appreciated their attempts to help despite the lack of usable information.

How I Overcame Chronic UTI (The First Time)

I’d reached the stage where my UTIs were still episodic. Sometimes I’d have a month or two without symptoms and I’d think, ‘This is it, I’ve cracked the case! UTIs are a thing of the past.’ I was always wrong.

Eventually, the antibiotics I was prescribed stopped working so well. The relief wasn’t so instant. In fact, the symptoms took so long to subside that I’m fairly certain it was just a natural progression of things, rather than any assistance from the drugs.

My symptoms had become constant. There wasn’t a single minute that I didn’t feel symptoms in my urinary tract, and I swung in and out of fever and sweats throughout the day. It was scary and I felt out of control of my body.

Frequent antibiotic use led to a bunch of other issues. My digestive system was continually upset and vaginal yeast infections became a persistent feature. I was nervous about jumping out of the life raft that antibiotics had become, but I also didn’t feel as though I had a choice. 

Research since then has shown that the urinary and vaginal microbiomes are interconnected. One has an impact on the other, so it’s often necessary to work on bringing both to a healthier state. I know Geeves discovered this on her own journey, too.

Finding The Right Help

I was lucky enough to meet a doctor who was fully behind my decision to steer away from the conventional approach. Together, we addressed my gut health, vaginal health, hormonal health and urinary tract health. 

I made a lot of changes. I changed my diet, I stopped taking hormonal birth control, and I implemented a specific supplement regimen aimed at addressing nutrient deficiencies and using select natural antimicrobials. I’ve shared more about this here.

My body began to recover. First my digestive issues subsided, then the yeast infections disappeared (I haven’t had even a hint of this in 6 years), and finally my chronic UTI symptoms sneakily made a departure.

I remember the day I realized my symptoms were gone. It was so anticlimactic somehow. I was hiking in Albania with my partner and the perfect storm of UTI-inducing things happened. We took a wrong turn and ended up hiking well into the evening, without enough water. It was tiring, I was wearing spandex, and there was an element of stress. 

As we hitchhiked back to town with a friendly truck driver, it dawned on me that I hadn’t thought about my bladder once. That was the turning point for me. The absence of symptoms crept up on me and stayed. I had a number of gloriously symptom-free, medication-free and supplement-free years.  

The Cure For Chronic UTI Might Not Be Permanent

You’ve probably already gathered that my recovery wasn’t the end of my story. Some people like to call it remission from chronic UTI rather than cure, and there is a logic to this. Just as we can’t guarantee we’ll never catch another cold or flu, there’s no way to guarantee you’ll never get another UTI.

I like to use the word recovery because I believe I recovered from my first experience of chronic UTI, and that the UTI I experienced later was unrelated. I have evidence to support that, too: My first ever positive UTI test. 

I got to know Klebsiella (a UTI causing pathogen) thanks to a mild food poisoning incident in Malaysia. We became acquainted in Kuala Lumpur, and continued our relationship in Kota Kinabalu, where I failed to find medical care. 

Weeks later, with continuing mild symptoms I was able to access UTI testing that identified my new friend. Because of the delay, it also took a while to get on top of it. For me, it was an important lesson in being prepared, even after years of UTI-free travel. Now I always ensure I carry an antibiotic with me when traveling, just in case I’m hit with a UTI in a remote area.

I would like to be able to tell people not to fear a future UTI, but to be prepared. I know it’s not easy to overcome the fear after a chronic UTI experience, but there are approaches you could try to help with the mental burden of chronic illness.

Is It Really A UTI?

There’s no question in my mind that an individual knows their own body better than anyone else. So I’m not implying that you might be wrong about your symptoms. It is important though to consider whether there may be another root cause.

Lower urinary tract symptoms can be caused by many things, and an exploration of possibilities could result in the ultimate answer. Many of our community members over at Live UTI Free experience other illnesses alongside UTI, and sometimes these conditions are the cause of their symptoms, rather than an infection.

I already mentioned vaginal yeast infection. That has a lot of crossover with UTI symptoms, as does bacterial vaginosis (BV). Pelvic floor disorders are also very common and can mimic the symptoms of a chronic UTI or even contribute to frequent infections.

Another condition that impacts many is endometriosis. I want to mention this one in more detail, partly because I’ve had a recent diagnosis of this myself, and partly because it can be so connected to the bladder. 

For instance, symptoms of endometriosis include pain or discomfort when passing urine, abdominal bloating, pain during sex, nausea, diarrhea, excessively heavy periods, difficulty becoming pregnant and pain passing stools (among others). If you scanned the symptoms of UTI above, you’ll have noticed that many of these symptoms also appear there.

My Endometriosis Diagnosis

Right around the time we went into our first COVID-19 lockdown I started to experience an unusual constellation of symptoms. I felt constantly full and could barely manage a few mouthfuls per meal. I was putting on weight despite my inability to eat much. I was bloated and tired. 

An old lower back injury had flared up and was painful during my periods. Then, I skipped a period altogether. For me, this was something that hadn’t happened before and it was the main clue that what I was going through wasn’t just a digestive problem.

How To Be Taken Seriously

The reality is, women’s health issues are often dismissed. Knowing this, and knowing that the types of symptoms I had would be diminished as ‘normal for a woman’ or ‘anxiety over weight gain’ or even ‘anxiety over COVID’ in this case, I booked five appointments with different clinics, hoping I wouldn’t need them all.

First was a series of blood tests to assess my hormone levels, then an abdominal ultrasound. Both were deemed unusual. So armed with these I went to my GP, knowing that self-purchased tests are not typically favored by doctors. She suggested anxiety as the cause. Next was a gynecologist who suggested being a woman was the cause. Then I saw a team of two female gynecologists who did everything they could to figure it out. 

They actually found something. I was quickly escalated to tumor marker testing and emergency gynecology at the local hospital. A few weeks later I had an answer. It was endometriosis.

Geeves and I recorded a recent chat with more detail about our own journeys, and you can watch the series over on YouTube.

No woman should have to jump through so many hoops for a diagnosis. The fact that I got one at all felt like a bit of a miracle. It’s just not good enough that our concerns and symptoms are dismissed, or that we have to fight so hard for an answer. I was in a privileged position of affordable healthcare and access to multiple clinicians at that time. This isn’t the case for most.

While it may not be possible to seek another opinion, at the very least, know that your symptoms are not ‘all in your head’ and there are support groups out there that can share helpful insights and an opportunity to be heard.

As for me, I’m on the road to recovery after excision surgery for endometriosis, and slowly dealing with a UTI caused by the post-surgery catheter. It hasn’t been my best year, but I’m back to doing the things I love, and I’m grateful for that.

Geeves and I will keep doing what we can to raise awareness around women’s health, and perhaps we’ll even get a chance to meet up in real life soon!

If you enjoyed this post, you might also like:

20 Helpful Tips for Traveling with a Chronic Illness

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Fact Check:

At Real Girl Review, we value truth and always strive for accuracy. Posts are updated regularly. If you read something that still doesn’t sound right, contact me at gv@realgirlreview.com. I will investigate the facts and make changes as I deem necessary.