And finally, I am free.
Family stories for sharing
Hey all! I figured I would post my story because I occasionally get messages and hope this can help others. I don’t 100% remember the dates because it’s been such a long struggle, but these should be pretty good ballparks! I’ll try to break it up into manageable chunks.
Infection: So my Ureaplasma Testes infection started in the spring of 2017 after I was raped. I got a rape kit and STD exams done about 2-3 days after, which included preventative pills for Chlamydia and gonorrhoea (azithromycin and idr, the other pill). About a month or so after the rape, I went to the doctor because I had insane itchiness since the rape that hadn’t gone away. I believe it started about a week after, but I don’t 100% remember.
They gave me some yeast infection medication and sent me on my way.
I didn’t realize they had left a voicemail also diagnosing me with BV until about a month later. So, I ended up not getting the medication because they said they couldn’t give me another prescription until I visited the doctor again. At the time, I couldn’t afford it and, to be honest, was also feeling traumatized about having to retell my story so many times to so many different people with super rude reactions.
“What are you going to do in the future to prevent being raped?”
Trying to get diagnosed:
Fast forward to November 2017, I finally decided I couldn’t keep putting this off and needed to deal with it. Schedule some appointments. The first one tells me I have BV and no good bacteria. I start taking probiotics and antibiotics. Itchiness doesn’t go away. And so begins my long journey of visiting doctor after doctor who just blames my anxiety, saying it’s because of rape and my vagina will never feel the same again. I am losing hope with all the gaslighting and health professionals.
Health professionals refused to believe me but somehow diagnosed me with recurring BV infections.
I switch up all my habits, wear only cotton underwear, try no soap, try different mild soaps, bleach my underwear to disinfect, try airing my vagina after showers and at night, etc. Absolutely nothing helps except a Ureaplasma STI Test report. I’ve been going to therapy during this time and feel more healed about the rape, so I don’t believe that this is just a mental symptom that was brought about by the rape and will never go back. I had visited over 25 medical professionals over this period, and no one had a good answer; most told me it was probably in my head.
During this time, my symptoms include intense itchiness, a weird smell that won’t go away, abnormal discharge (differed during different times, but super yellow, sometimes neon, sometimes almost green), pain, pelvic pain on occasion, and spotting more than usual. I don’t usually get yeast infections, but I was getting them more often. I was also getting UTIs more often; I had never really had one before. On occasion, painful urination, even when I didn’t have a UTI. Not all of these symptoms happened at the same time; some came and went, but they all were abnormal for me and happened during the many months and years I struggled with this.
My STD tests would always come out with an incredibly high pH. Always off the chart high. Doctors would usually be surprised at how high the Ureaplasma Test was. Wet mounts always came back with a high number of white blood cells. Occasionally, I would come back with a yeast infection. Most of the time, it would come back with a BV diagnosis. If my STI tests didn’t show BV at the time of STD testing, I usually just had to wait a few days or a week before it would return.
At this point, I was losing hope.
I kept coming back to doctors to at least get treated for BV because the itchiness was SO BAD. After 1 year, 25+ health care professionals, so much gaslighting, telling me it was in my head, not being believed, reliving this trauma, I FINALLY found a doctor who believed me and wanted to get to the bottom of this. I told her I never had BV STD infections before, and now, every month, I’m getting diagnosed. She said, “Yeah, something is going on. Your pH is incredibly high, and many white blood cells are on your wet mount; that’s not normal.
I will do every test I can think of, and we’ll get to the bottom of this.
” YAY. She said there was one test she didn’t usually send out for and hadn’t in about 3 years, and every time she did send it out, it came back negative, but we’ll try it! Because my wet mount returned with such an incredibly high number of white blood cells, she felt comfortable treating me with azithromycin because that number of blood cells was usually due to the Ureaplasma Test.
And even if not, azithromycin treated a few other things. Cool. Doubt it was Chlamydia because I haven’t had sex since the rape and had been retested a billion times, but whatever.
It turns out that sending out the STI test for ureaplasma and mycoplasma was a good call. I had the ureaplasma reticulum! This was the first case she had seen in years, and when I went back about a month later, she told me she had diagnosed three other cases because of me!
I took azithromycin and metronidazole (because, of course, more BV) and a yeast infection pill simultaneously. This didn’t help my STD issues. I came back two months later, retested, and still have it. She gave me another dose of azithromycin because she felt ureaplasma usually reacted better to this. I ended up taking it about 5 or 6 different times during the year of 2018 due to being scheduled with different doctors who wanted to try the same thing, just in case, and once because I was stupid and possibly reinfected myself by having unprotected sex with a partner before he was treated.
Either way, the azithromycin didn’t make it completely disappear. It did help and would make about 75-90% of the itchiness go away, but it would return. It would kill most bacteria, and the antibiotic-resistant strain would return and recolonize.
I finally went to a different OBGYN in June 2019 because the previous clinic kept losing my Lab Ureaplasma results, and a couple of members made some comments that made me feel ashamed/slut-shamed for coming back so often. From now on, this new OBGYN, which I will refer to as Doctor A, was amazing, sweet, reassuring that we would figure this out and sorry that I had been through so much. She wanted to try two weeks of doxycycline because the literature supported this being the first go-to antibiotic.
I felt little hope with this because the previous clinic had reassured me that doxycycline was less likely to work. And some studies I read seemed to have supported this. I didn’t get retested until September 2019 with a different OBGYN, which I will refer to as Doctor B because Doctor A was only visiting an unavailable doctor.
I still had itchiness, so I wasn’t going with much hope.
Doctor b was amazing and had backup plans. If I were diagnosed with ureaplasma reticulum, we would get it STI tested for antibiotic resistance and send it to an infectious disease specialist for consultation if resistance was found. I am allergic (anaphylaxis) to ciprofloxacin, so the likelihood that I would be allergic to other fluoroquinolones is greater.
It complicates my STI case since those are usually the backup options when doxycycline and azithromycin fail. Suppose fluoroquinolones ended up being the only option. In that case, Doctor B would refer me to an immunology (I think??) doctor so that I could see if I was allergic to whichever one I needed.
Luckily, the doxycycline did its job, and my test showed no ureaplasma. I am still in disbelief to this day.
Follow-up Treatment Plan:
I still had itchiness and BV even though I was ureaplasma-free. So doctor b decided to put me on 2 weeks of metronidazole (pill), 21 nights of boric acid vaginal suppositories, and then a twice weekly metrogel for 5-6 months (as a prophylactic, aka preventative measure). The weird smell had gone away, and the itchiness had mostly gone away but occasionally came back.
However, I had trouble getting the metrogel, so I went without it for two weeks. I was inconsistent about the boric acid suppositories. I took them at different hours because my sleep schedule was everywhere. So, if I go back next month for my check-up and still have issues, I will ask Doc B if I can redo this STI testing regime again because I think it was super helpful, and there may have been some user error that impacted effectiveness.
I hope this helps people.