Monday, April 22, 2019

#Microblog Mondays: Too Much Information?

I am almost at the two week mark from the hysterectomy, and I am trying (and failing) to adequately "take it easy," despite spending all day every day in pajamas, never leaving the house except to sit on a deck if it's not pouring, reading, obsessing over flower catalogs, doing puzzles, etc. etc. Still, if I haven't been prone most of the day, my incisions hurt and I feel crappy. I sort of feel like if I laid any lower I'd be dead, but maybe this is just how recovery goes.

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!


  1. I think it's natural to be thrown by information like this. You're at a low ebb anyway, after surgery, trying to recover, going through the inevitable emotions of losing your uterus. And so I'm not surprised it's brought up memories and questions and pain.

    So yes, we read and interpret our medical results at our own peril. But resisting? I wouldn't be able to do it.

    In the meantime, keep resting. You have so much more internal healing to do, rather than just the incisions you can see or feel externally. So, even if it is driving you crazy, you need to sleep, read, rest, lie on the couch and binge watch something, and be a lady of leisure for once.

    Good luck!

    1. It makes me feel so much better that the Pandora's box is universal. The healing is so multi-layered, you're right. And I really, really suck at being a lady of leisure. I am enjoying it, but I get so incredibly restless. My body is definitely telling me when I've done too much though, and demands complete rest. I wish there would be an alarm that would go off if I was moving around too much... :)

  2. Jess, I am sorry for the pain you are having to go through. Physically and emotionally.
    You raise an important question and while i don't have an answer, I think that sometimes things are meant to be the way they are. I know this sounds philosophical but it is something I believe in. So I will leave you with that thought if that comforts in any way.
    If not, you have all my love and hugs.

    1. Thank you, Parul! We'll see when I have my next appointment if this means anything at all -- in some ways I would love an answer, and it would help bring closure to this whole part of my life. Thank you for the love and hugs!

  3. I was wondering if you might get some sort of answers, finally, with the pathology report. That’s my medical brain always at work.
    But yeah...I feel like sometimes we do get too much information without the knowledge of a doctor to guide us on what we read, and we all know the rabbit hole that is Dr. Google. I am sorry it brought up so much of old feelings, that really sucks.
    As hard as it is, I urge you to listen to your body and give it what it needs right now. Sending you lots of love.

    1. Me, too -- when I saw I could read it I was nervous and excited all at once, but then I just felt crappy after. I want to be sure to ask for answers at my appointment, but in some ways I don't want to be disappointed again. If that makes sense at all. Thank you so much for your thoughts, and I will try try try to rest as much as I need to. I have a friend who is bringing over a wheelchair tomorrow so we can walk around my neighborhood and I won't be walking at all, which seems kind of over the top and ridiculous at first but then is also kind of brilliant as I am feeling like a freaking shut in. Ha.

  4. Information and knowledge can certainly be double-edged. I'm in Mali's camp. I would want to know. And like you, I'd try to figure it out myself while waiting to ask an expert. I'd draw all sorts of conclusions, probably some of them valid and some of them not. "Figuring out" is part of how I exert the illusion of control when I feel I'm not in control.

    Happy continued healing -- all kinds.

    1. Oh my gosh, this: " "Figuring out" is part of how I exert the illusion of control when I feel I'm not in control." That is how I live my life! And it is exhausting much of the time. I am restless in my resting, and having school dreams like I do when I am getting ready to go back in September. It's odd to be so apart from everything. It's hard to see the plants coming up and the weeds coming in and know that I can do absolutely nothing about it for weeks. But, healing! Healing healing healing. Thank you!

  5. I'm always a fan of more answers and information so I definitely would have looked at my digital chart. If you have questions, I would email your doctor and ask them if they are going to eat away at you until your appt.

    Take care of yourself. You and Bryce could only make decisions on the information that you had at the time from your doctor.

    1. Thank you so much -- I appreciate it! You remind me of a quote a friend sent me when I was feeling down about how I got to the point that I was surgically removing my reproductive organs...
      "Forgive yourself for not knowing what you didn't know until you lived through it. Honor your path. Trust your journey. Learn, grow, evolve, become." - Creig Crippen

      Wise words, and so hard to put into practice when it's so easy to look for self blame in everything.

      Emailing my doctor is a great idea! I feel silly that I didn't even think about it! Thank you so much.

  6. Ooof. That's a tough one. I know I've never been able to resist looking at any information that's available, so I really hear you about wanting to read the report. It makes so much sense that this would bring so many difficult and painful questions forward. If it's something that's going to make you wonder and question, perhaps a call to the office to get some of those questions started/answered? It's a lot to take in and peace of mind is an important thing. Whatever you decide or learn, many wishes for healing and peace.

    Good luck with the resting! It is so hard - resting and resisting doing too much postop is truly much more difficult than a lot of people give it credit for.

  7. I, too, wonder how wise it is for patients to have such detailed information in medical-ese without the benefit of someone translating the results. I also wonder why all the information came out after your uterus came out; couldn't they figure this out before? I can only imagine how this must make you feel. Love you.

  8. It's interesting and I know with my hospital system, we do get normal results released but usually the doctor's comments are on there. Otherwise, like you, everyone would totally go down a rabbit hole. I hope you get all your questions answered at your appointment.