How did I get help with my Disease? Hannah’s Story

HANNAH ROSE

Becoming Your Own Health Advocate

It’s hard to know where to start this blog. So I’ll start at what feels like the beginning, a natural place, which for me was an STI diagnosis after testing of ureaplasma.

I was at my grandmother’s house when my doctor (the first in a line of many) called. I took the call in the backyard. In addition to the standard culture for a urinary tract infection, she had ordered a ureaplasma Urealyticum infection Urine Swab Test (looking back, I feel grateful to have had a doctor who thought to do this). It was the first time I’d heard of this STI called ureaplasma, although afterwards, many times, I would often wonder with well-intentioned frustration why it’s not widely talked about.

Commensal or not?

She explained that the medical community is divided over whether to treat it or not because it lives naturally in the body as “commensal” bacteria and is, in fact, present in up to 80% of American women’s vaginal microbiomes. It’s thought only to become a problem when there is dysbiosis (imbalance) in the vaginal microbiome and when it is present with other harmful bacteria. In my case, she thought the Urea might have been contributing to the three UTIs I managed to develop within a month. Given I was symptomatic, we treated with a single 1g dose of azithromycin.

The treatment must not have worked because two months later, I got an even worse UTI after hiking. This was before I’d learned to pee immediately after a sweaty workout. But all the same, I’m almost certain the Lululemon leggings had something to do with it. (I recommend wearing only 100% cotton underwear and polyester if you want to get sweaty, and not lingerie for more than an hour or two at a time. If sensuality is important to you, you don’t have to give it up, even if you suffer from vaginal infections!)

How it started

On June 10 of that year, I came down with the worst UTI I’ve had to date and hope never to have again. It wasn’t responding to treatment; my doctor was out of town, and it was the only time in my life I recall begging. Seriously. I pleaded with the doctor on-call to prescribe a Z-pack. I explained that I was certain that ureaplasma was causing this UTI. He must have taken pity on me because eventually, he relented and did.

This is the part of the story where I say that MGen, as almost any doctor will look at you with sympathy and tell you, is one of the most hard-to-get-rid-of infections out there. Ureaplasmas belong to a class of bacteria called Mollicutes, including mycoplasmas. When people say “MGen,” they often talk about ureaplasmas, as with other species of bacteria, including some beneficial and harmful strains. 

A healthy bacteria?

Mollicutes are Gram-negative. They lack a cell wall, so they don’t show up under a microscope and can’t be treated with antibiotics that target cell wall synthesis. They are notoriously hard to eliminate because they form biofilms (as many bacteria do), matrixed structures of synergistic bacteria that confer resistance to antibiotics because they aren’t floating around where antibiotics can get at them. (In the case of chronic infections, a naturopathic or integrative practitioner may recommend breaking up the biofilm, during which time your symptoms will worsen, to treat firstly with a Ureaplasma test with antibiotics effectively. Thankfully, I never had to do this.)

I started to feel better only on the last day of the Z-pack. Ordinarily, you continue taking antibiotics for several days after you begin to feel better, so this wasn’t a good sign. The antibiotics calmed the storm but didn’t knock out the infection, leaving a low-lying cloud in the form of low-grade burning that hung around for two months.

Suffering in silence

Those were a very anxious two months. My brain has often blurred, but I distinctly remember practising gentle yoga, which felt like the only exercise I could do. I wore thin cotton pyjama shorts, which felt like the only pants I could wear. Any amount of sugar made my symptoms flare up, too.

In July, I checked with an STI specialist. Ureaplasma is an infectious disease, and I strongly believe it should be included in STI education. Even if, most of the time, it lives incongruously and harmlessly in the body, it’s spread through sex (i.e., sex without a condom). Even if you asked your partner to get checked before having sex, he/she wouldn’t be able to tell you if they had Mycoplasma because it’s not included on STI test panels. It should be. So you know.

Taking matters into my own hands

The infectious diseases doctor was not of much help regarding the UTIs. He said I had to be actively having an infection for a urine culture to show anything (ahem, as a gynaecologist later told me, constant low-grade burning IS an active infection). He did say they could have colonised the IUD I had in place. In retrospect, because my strings were cut short, this was unlikely. But not impossible. I had it removed, but my symptoms didn’t resolve, which was when I truly took matters into my own hands.

So, I researched about testing positive for STI. I also researched antimicrobial susceptibility patterns of antibiotic classes prescribed to test and treat Urea Urealyticum. But also macrolides, tetracyclines (to which I am allergic), and fluoroquinolones. My goal in reading the literature was to identify the antibiotic with the highest success rate and to which the ureaplasmas circulating in the universe have the lowest resistance, on average. I found a paper I shared with my doctor indicating that moxifloxacin might be the antibiotic I sought. (I wish I still had the paper saved, but I deleted all of my bookmarks from that time, and I can’t dig it out of my messages with my provider because the clinic changed its patient portal.)

Finally, someone to help me

She read the paper. Out of kindness, wanting to help me, and probably being open to trying anything. So she prescribed the moxifloxacin 400mg tablets for 7 days. She also prescribed a single dose of azithromycin for my partner, which I was able to pick up at the pharmacy for him—a small miracle.

Fluoroquinolones are terrifying to take. I do not recommend taking them unless you have to. They come with a long list of side effects, the most dangerous of which is joint damage. During the week I took them (and for some time after), I was careful not to do high-impact workouts. Or anything that could damage my joints because of fluoroquinolones. (anything that ends in -floxacin) increases your risk of permanent joint damage and even tendon rupture.

After all that

To this day, I am grateful to this doctor for prescribing the moxifloxacin and to myself. A month after finishing the antibiotic, I took another exam for the bacteria, and it was negative. A year later, the result is still negative. It may be hiding out in a biofilm, where it can go undetected, but if so, it won’t trouble me.

This story shows what tiny intuitions and the kindness of providers. And your luck and initiative to find the providers who can and will help you — can do. I love reading scientific journal articles. However, regarding my health, looking for research to find new leads and inform experimental care pathways felt too personal. So, with so many negative emotions wrapped up in it. It was worth it, though. I’ve become passionate about bridging the gap between research and care because it worked for me. I intend none of the above as medical advice. Draw what connections you will make to your health journey. The medical advice I will share is this: 

Be your advocate and get an STI at-home test often.