In starting this blog, it’s hard to know where to start. So I’ll start at what feels like the beginning, a natural place, which for me was a diagnosis 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 lab test for ureaplasma (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 bacteria called ureaplasma, although afterwards, many times, I would wonder with well-intentioned frustration why it’s not more widely talked about.
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 to only become a problem when there is dysbiosis (imbalance) in the vaginal microbiome and/or when it is present with other, harmful bacteria. In my case, she thought the ureaplasma may have been contributing to the three UTIs I managed to develop within the span of a month. Given I was symptomatic, we treated with a single 1g dose of azithromycin.
Note: Two strains of ureaplasma exist: Ureaplasma urealyticum and Ureaplasma parvum. Some lab tests only test for “Ureaplasma spp.,” in which case a positive result would indicate you have one of the two. More nuanced tests can tell you which one. (I had ureaplasma urealyticum.)
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, polyester if you plan on getting sweaty, and not wearing 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!)
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, explaining that I was certain this UTI was caused by ureaplasma. He must have taken pity on me, because eventually he relented and did.
This is the part in the story in which I say that ureaplasma, 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, which also includes the mycoplasmas. When people say “mycoplasmas,” they’re often talking about ureaplasmas, too. As with other species of bacteria that include some beneficial and other harmful strains (I’m looking at you, E. coli), while there are over 200 kinds of mycoplasmas, only a few of them — Mycoplasma pneumoniae, which causes respiratory tract infections, and Mycoplasma genitalium, Mycoplasma hominis, and Ureaplasma spp., which are implicated in genitourinary infections — are harmful. (I never tested positive for any of the mycoplasmas.)
Mollicutes are Gram-negative; they lack a cell wall, which means 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 get rid of because they form biofilms (as many bacteria do), matrixed structures of synergistic bacteria that confer resistance to antibiotics due to the fact that the bacteria 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, in order to effectively treat with antibiotics. Thankfully, I never had to do this.)
The last day of the Z-pack was only the first I really started to feel better; 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 in their wake a low-lying cloud in the form of low-grade burning that hung around for two months.
Those were a very anxious two months. My brain has blurred a lot of this time in my life, but I distinctly remember practicing gentle yoga, which felt like the only exercise I could do, in thin cotton pajama shorts, which felt like the only pants I could wear. Any amount of sugar made my symptoms flare up, too.
In July, I saw an infectious diseases specialist. Ureaplasma is considered 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 tested before having sex, he/she wouldn’t be able to tell you if they had ureaplasma, because it’s not included on STI panels. It should be. So you know.
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 gynecologist later told me, constant low-grade burning IS an active infection). He did say the IUD I had in place could be colonized. 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.
I researched. I researched antimicrobial susceptibility patterns of antibiotic classes prescribed to treat ureaplasma: 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 that I shared with my doctor indicating that moxifloxacin might be the antibiotic I was looking for. (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.) She read the paper and, out of kindness and wanting to help me, I think, and probably openness to trying anything that could, 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 absolutely 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 fluoroquinolones (anything that ends in -floxacin) increase your risk of permanent joint damage and even tendon rupture.
To this day I am grateful to this doctor for prescribing the moxifloxacin, and to myself. A month after finishing the antibiotic, my retest for ureaplasma was negative. A year later, it is still negative. It’s totally possible that it is hiding out in a biofilm, where it can go undetected, but if so, it’s not giving me any trouble.
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, but when it came to my health, looking for research to find new leads and inform experimental care pathways felt too personal, so many negative emotions wrapped up in it. It was worth it, though. I’ve become a passionate advocate for bridging the gap between research and care, because for me, it worked. None of the above is intended as medical advice; draw what connections you will to your health journey. The medical advice I will share is this:
Be your own advocate.