WOMEN ON FIRE
WOMEN
ON FIRE
MISS
DIAGNOSED
Lauryn Heintz's Story
It was just like any other Saturday, on the floor at work, selling mid-range shoes to patrons wearing masks.
Waking up that morning was fine, I was tired but that was normal. I rushed out the door without breakfast so that I would make it to the mall just in time.
Around noon, I began having pretty intense pains in the lower, left side of my stomach. I was slightly dizzy and had a headache. Thinking my ailment was obvious, I ate something. That didn’t help. Then I went to the washroom. That didn’t help either.
I consider myself to be pretty in-tune with my body and this combination of symptoms was something that I was not familiar with. The only thing I could think to do was ask someone who knows more than me, so I called 811.
During my eight-hour visit the team did almost every test— urine, blood, an ultrasound, even a pelvic exam.
In the end, my hemoglobin and iron levels were low, but manageable, nothing out of the ordinary showed up on my ultrasound and there was “not enough” bacteria in my urine for me to have an infection.
The doctor told me to take Tylenol and Advil together for the pain and sent me home.
Fast forward to Tuesday, I was at my parent’s house in Provost, Alta., for my fall reading break. I felt fine when I woke up, but got progressively worse throughout the day. By mid-afternoon, I was alternating between shivering and sweating, so dizzy I could hardly stand and had a pounding headache.
The next three days were the worst. I was physically shaking because of how cold I was, even under six blankets and a heating bag. What I didn’t know at the time was I was actually shivering because of how high my fever was. I was sweating through a thick sweatshirt every day. The pains in my abdomen were constant, stabbing repeatedly like a fork into a well-done steak.
When my mom could not break my fever after three days, she decided it was time for me to go to the ER in Provost.
The tests they did were routine and included a rapid COVID-19 test as I was displaying symptoms and had come from a highly-positive area in the province. The standard protocol surrounding coronavirus had been followed while I was at Rockyview, although I was not tested there. My COVID-19-like symptoms only began to intensify as I got sicker, which didn’t happen until I got to Provost.
It was very clear to the nurses that something was wrong. And so, after some bloodwork and a nose-swab, I was carted down the hall to my room where I had to stay in isolation until my test came back.
They were pumping me full of IV fluids and antibiotics to treat what turned out to be a severe kidney infection that stemmed from a UTI. A missed UTI.
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While I was writhing in pain on my parent’s couch I had missed a phone call from the charge nurse at Rockyview. She left me a voicemail saying that my urine culture had come back and that she wanted me to come in and get antibiotics for a urinary tract infection.
I called back and said that I was actually in the hospital with a severe kidney infection that I was being treated for. She asked me lots of questions I didn’t know the answers to and wished me well.
I was confused at first because the ER doctor had told me that there weren’t enough bacteria in my urine test for me to have an infection. So, I asked my doctor at the Provost hospital how that could have happened.
He explained to me that there are two different urine tests that can be done. One is the simple dipstick test that is completed at the hospital and the second is a more intensive test that determines the bacteria responsible for the infection so it can be treated more effectively. The second test takes a bit more time, which is why I only got the results on Wednesday after initiating the process on Saturday.
The doctor I saw in Calgary wanted to wait for the results of my comprehensive lab to come back before he treated me for anything.
This is a practice that is done without consequence quite frequently, but in my case led to a three and a half-day hospitalization followed by a week of three-a-day antibiotics and follow-up tests.
This spurred a lot of questions in my mind. I had had dozens of UTIs before in my life and none of my initial symptoms were close this time to what I had experienced previously. Why? What was different this time that I was not prescribed antibiotics after my initial assessment and tests? How did it go this far?
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I don’t know if it’s just me, but when I see an expert (a medical professional, for example), I expect to be given answers. I have been lucky thus far, that this was the only instance in my life where I didn’t get the help that I needed and expected. There are lots of individuals (especially women and especially women that belong to the BIPOC community) that cannot say the same.
All in all, I did end up getting the care I needed. Although late, it was not too late.
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Lauryn represents a much larger problem. A Canadian study found UTIs to be one of the most common bacterial infections affecting about 12 to 15 per cent of women annually and 50 per cent of women by 32 years of age.
I sat on the small, rigid step ladder in the stock room and dialled. I listened to the COVID-19 jargon intermixed with some elevator music for a while before a nurse picked up.
I gave her the whole spiel—told her how I was feeling and that I didn’t know what was wrong. Her recommendation was that if the pain persisted for more than four hours, I should pay a visit to the emergency room. By this point, it was past 4 p.m., and so after asking my boss, I clocked out and headed down the road to Rockyview General Hospital’s ER.
LEIGH-ANN
McGOVERN, 44
Muskoka area, Ont.
When Leigh-Ann McGovern went to see her family doctor around Christmas in 2019, she was certain she had another UTI and requested antibiotics. Her doctor sent off her urine sample and told McGovern to return home and see how she felt in a couple of days. No antibiotics were prescribed. Forty-eight hours later, McGovern's head felt like it was going to explode. She had severe back pain, chills and a fever. She ended up in the emergency room with sepsis — a serious condition caused by infections.
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McGovern said the four or five days she spent in the hospital are a blur. At one point, her fever spiked to 40 degrees.
"I've never been that sick before," she said.
Afterwards, she was discharged with an at-home IV she had to wear like a fanny-pack for three weeks. A nurse would come to change it every eight hours.
HERSTORY OF UTIs
McGovern has dealt with UTIs and resulting kidney infections for a long time. She never presents with the typical symptoms of painful urination or the constant feeling of having to pee. But she knows her body, and she knows when she has one.
"I'll have a fever, and I'll have back pain," she said. "Then I'll go in, and I'll have a full-blown kidney infection."
Part of what frustrates McGovern is she believes her 2019 hospital visit could have been avoided if her family doctor, who McGovern said was new, had trusted McGovern's explanation of her unorthodox UTI symptoms. McGovern alleges the doctor just "blew it off" because she didn't present with the typical UTI symptoms.
Now, when McGovern has a slight hint that she may have an infection, she goes straight to the emergency room and asks for a prescription.
"I know how fast it can go badly."
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LIVING WITH A SUPERBUG
Close to two years ago, McGovern went in for another UTI and was told there was now only one antibiotic that would clear up her infection. She was diagnosed with a superbug called Extended spectrum B-lactamase — or ESBL — a type of enzyme produced by bacteria that breaks down and destroys common antibiotics.
A 2014 study published by the Urology Annals states UTIs complicated by ESBL organisms more often lead to uncertain outcomes and prolonged hospitalization.
"I was like, 'How the heck did I get that?'"
The doctors said it's usually contracted in healthcare settings, like hospitals or nursing homes. McGovern believes she may have contracted it when she had a catheter put in during a tummy-tuck surgery two years ago.
According to McGovern, the ESBL also makes her UTIs more frequent. Since Christmas 2020, she has had three UTIs.
"Basically, every three weeks, I get a new infection," she said.
She's hoping to see an infectious disease expert but said the pandemic has made that increasingly difficult, with many doctors not accepting new patients.
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URINE TESTS PROVIDING DIFFERENT RESULTS
McGovern believes she has an embedded UTI — this occurs when the bacteria stick to the bladder lining, it may remain dormant for a while but then can flare up again and cause another UTI.
She just finished a 14-day course of antibiotics, and her following urine test showed she no longer had an infection.
"Right now, my urine is clear," she said. "But probably three weeks from now, it won't be clear."
To keep track of her infection, McGovern purchased UTI dipstick tests from Amazon. Every morning, she'll test her urine.
"It [the results] was clear, clear, clear. Then the next day, it was red, which indicates you have an infection."
She's also regularly dropping off urine samples at the lab. She said for three weeks, the urine culture tests were coming back clear, then suddenly, it was back.
"They're [McGovern's doctors] just as baffled," she said. "They don't even know what to tell me."
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CONNECTING WITH OTHERS
McGovern's part of a UTI support group on Facebook. She said it's not uncommon for other women in the group to be terrified to have sex, knowing it could result in another UTI. She also noted that despite how common UTIs are among women, the diagnosis, treatment, and cause still seem mysterious.
"Typically, if a little kid gets a UTI, they're like 'You're not wiping properly, or you're having baths, and that's causing it.' But all these women in these groups are not doing any of those things. To me, I feel like once you have it in your body, it's just in there. That's why they're recurring because they're never really gone."
IDELLE
ELLIS, 33
Uxbridge, Ont.
After a long day of homeschooling her three children, all Idelle Ellis wants is a good night’s sleep, but a chronic, embedded urinary tract infection (UTI) that began in December 2020 makes that nearly impossible.
The pressure of having to urinate wakes her up every half hour to hour.
“I would [sit] on the toilet, [fall] asleep and [be] hunched in pain,” says Ellis, “trying to sleep is the worst part.
Ellis believes her experience began with a traumatic accident she had on Nov.14, 2020. She severed a nerve and a tendon in her hand which had her in splint for six weeks and caused significant blood loss.
“That experience definitely lowered my immune system. It was a big shock to my body,” says Ellis.
Towards the end of December, Ellis noticed that she was experiencing a burning sensation when urinating, having to urinate often and needing a toilet at a moment’s notice. All symptoms associated with a UTI.
Although she had never had a urinary tract infection before, Ellis had a feeling that that was what she was experiencing. She says she tries to limit use of pharmaceuticals when she can and opted for more natural methods to flush the bacteria out of her system.
“I was drinking water, cranberry juice, you know all that stuff you hear. Just anything I could do to try and get this bacteria out of my body,” Ellis recalls, “nothing really seemed to help.”
So, Ellis made a call to her family doctor who gave her a three-day prescription of MacroBid, an antibiotic that is commonly used for urinary tract infections. Because she spoke to her doctor over the phone, Ellis’ urine was not cultured at this time.
“I think that was a crucial mistake, right there, because if I had been given a urine test then, I probably would have caught the bacteria,” says Ellis,
Over the next few months, Ellis was prescribed a variety of short-term antibiotics on several occasions as her infection was not subsiding. She even made a trip to the emergency room when she feared that it was spreading to her kidneys.
Although her symptoms persisted, Ellis’s urine came back negative for bacteria when tested multiple times. Her agony was constant, not just when she was in the bathroom, it was clear that what had been done thus far was not working
Desperate for a solution and feeling gaslighted by her family doctor, she turned to social media for advice.
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Ellis connected with women in the United States and the United Kingdom who shared her experiences— some had been suffering for years.
“Without my amazing support system from Instagram, the people I’ve [sought] out I probably would’ve been— who knows where I’d be, because my doctor wasn’t helping me, at all,” says Ellis.
These internet friends connected Ellis to her new, current doctor whom she says characterizes her infection as embedded and has opted to treat her with long-term antibiotics.
In addition to her long-term antibiotics, Ellis also takes several natural herbs as directed by her naturopath.
Ellis is extremely happy with the support she now has from her doctors and her fellow chronic UTI community members, especially after being dismissed repeatedly by her family doctor.
She stresses the importance of knowing your body and trusting your instinct, something she credits on her journey to recovery.
STEPHANIE
HASTIE, 27
Niagara Falls, Ont.
Stephanie Hastie went for a hike for the first time in two years this spring. Although it’s something she loves, her constant anxiety around being near a bathroom due to a chronic urinary tract infection (UTI) has limited her from doing so, until now.
She stresses that she is not in "perfect" condition, but is the best she has been since 2019.
Hastie’s UTI journey began when she was six years old. From then until age 12, Hastie had at least four or five infections a year. She was prescribed short stretches of antibiotics each time and that always did the job. This pattern continued throughout her teenage years and into her early twenties.
When Hastie was 25, she began to have the typical symptoms of a UTI, something she was all too familiar with. But, the usual short-term treatment didn’t do the trick this time, despite it working for her so many times before.
“The pain just never subsided. I was struggling to work, I wasn’t sleeping at night, I [couldn’t] have intimate relations, I couldn’t go to social events,” Hastie recalls.
She was used to living with frequency, urgency and burning for most of her life, but this was different. It became unbearable.
Hastie’s current treatment is long-term, high-dose antibiotics now that her infection has been deemed chronic. However, her treatment hasn’t always been so simple.
At 17, Hastie was constantly having an immense amount of pain in her bladder. Her doctor ordered a cystoscopy, a procedure that gives a detailed look into the inside of the bladder and urethra. At this time, she was also given hydrodistension, which is supposed to help with frequency and urgency, something she was subject to constantly.
“It didn’t [help]. It was probably one of the most horrific experiences I’ve gone through in my life,” says Hastie.
In addition to these procedures and the dozens of rounds of short-term antibiotics, Hastie has also been put on overactive bladder medication and been a candidate for Botox injections in her bladder. She declined the latter after doing research and finding incontinence as a possible side effect.
She is now under the care of Prof. James Malone-Lee, a chronic UTI specialist in the United Kingdom, whom she says is “honest to God, saving my life.”
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“I think it took a long time to get this conversation
started because a: predominantly a woman’s
problem, b: it’s invisible, you can’t see it, and c. it
is seen as a very simple infection, it’s not seen as
complicated, it’s not seen as life-threatening and
it’s not seen life-altering.”
-Stephanie Hastie
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Prof. Malone-Lee became Hastie’s specialist after she found him during a desperate, late-night Google search, which she doesn’t recommend to anyone.
Like many in the chronic UTI community, Hastie finds comfort in the stories and support of the women who share her experiences.
Hastie realized that there exists a large group of women who suffer daily from recurrent or chronic urinary tract infections and that they were passionate about sharing their stories. However, most of the women she found were in the U.S. or the U.K.
“I thought it was craziness that no one was talking about it in Canada, but I knew people that struggle with their bladder,” says Hastie.
She then began posting her story to her Instagram and uses the platform to educate and engage with others.
“I think it took a long time to get this conversation started because a: predominantly a woman’s problem, b: it’s invisible, you can’t see it, and c. it is seen as a very simple infection, it’s not seen as complicated, it’s not seen as life-threatening and it’s not seen life-altering,” says Hastie.
Now that her condition has improved, Hastie says she “sees a future” and has decided to move across the country to British Columbia where she will pursue a career in nutrition.
