Last week I looked at my online chart from the hospital system because it said I had a new report/test result. I have lived practically my whole life without having access to my own reports, and I'm not sure that this new window into my health is actually "healthy" for me.
It was my pathology report, for my uterus and tube, now excised and summarily filleted and sliced up for examination.
I read it, and then had to look up a whole bunch of things, and then when I did look them up, I felt...sad. And confused. The two things that made me feel this way were leiomyomata uteri with degenerative changes and adenomyosis.
So, leiomyomata uteri are just uterine fibroids, and I couldn't get a good read on what "degenerative changes" are other than some things I saw that said it's just the benign tumor that is a fibroid mimicking cancerous cell changes. Which may or may not be accurate, because there was no explanation or link to anything and so I had to rely on Dr. Google to help me. Okay, so I had fibroids. It's not like I was using my uterus functionally anyway and it's super common in women my age, and now they're gone along with the organ that hosted them, so that was that.
The adenomyosis was the one that was troubling. I was told my uterus was 2-3 times the normal size when removed, and apparently that is right in line with this diagnosis. Which is, thank you Dr. Google, when your endometrium grows into the muscle layer of your uterus instead of out from, and it thickens the uterine walls and causes painful, heavy periods. Huh. When I wasn't pumped full of artificial hormone treatments, my periods were painful, and heavy. It mentioned a bloated, full feeling in the low belly as a symptom. Check. And then it said the thing that made me feel awfully stabby:
"Frequently a cause of infertility and embryo implantation failure."
Huh. If I could sum up our painful and lengthy IVF experience, it would be "implantation failure." The two times I did have implantation, one was in my tube and the other ended in early miscarriage. The other 25 embryos that went into my uterus didn't stay. They couldn't tell me why. I didn't get any kind of label for what was making my womb so damn inhospitable.
It (sort of) made me feel better that it said it's more common than not and is treated either by medical menopause (the devil lupron), removal of the lining, or hysterectomy, largely due to pain and quality of life, and then the adenomyosis is typically diagnosed when the organ is put through a pathology exam.
So, my feelings were complicated. Maybe, just maybe, this was the reason that we'd been searching for -- the WHY for our repeated failure. But then also, if this was the WHY, well then it was pretty damn clear that my uterus had been the biggest culprit all along and we were never going to be successful. Or at least, that maybe if this was known information we could have made different decisions sooner, not that that would have necessarily changed the outcome (and it's moot anyway, seeing as even a time-turner can only safely take you back 5 hours). I lay in a funk on the couch digesting all this information.
Which is the question -- should I have access to all of this information without any ability to have it explained by a living, breathing doctor? Should I be left to interpret the results myself, causing a fair amount of mental anguish, when maybe it isn't as much of a smoking gun as I thought? Is this TOO MUCH information, too easily read and too muddily understood? I have my follow-up to my post-op follow-up in May, and I have a LOT of questions.
I thought it would be nice to be able to review my own medical records as they are added to, but I think it's left me with more questions than answers -- questions that are stirring up old muck that was decently settled but seems to be just as capable of hurting me, four years later.
Want to read more #Microblog Mondays? Ones that are likely shorter than this one, which is NOT micro at all, sorry...? Go here and enjoy!