whimpernotes

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anyway update i guess. More than a month since surgery and I'm doing good. I'm allowed to run again which I'm also more happy to do now that exercise does not induce large amounts of blood loss, huge improvement thank you modern medicine. 10/10 surgery would recommend. The scars are tiny and also i wouldn't care if they were large.

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Very surprised that during my entire recovery so far i never reached the level of discomfort i felt just before surgery, which i had somehow convinced myself wasn't pain.

ALSO now all my surgery incisions are very near closed. 😊 very happy, huge relief. I really don't care much if it scars. I'll be applying some countermeasures but they're just tiny marks now.

Not allowed to run yet but i can't wait to. Generally very happy. I did read through the surgery report because I still find it hard to believe that I really have endo stage IV! But i guess there can't really be any doubt about that now. It was all over, even on my guts (apparently).

the other thing was relatively simple if possibly responsible for most of my symptoms. but this is such a weird disease. It looks a lot like cells that belong to your uterus but they're really not that. It reminds me of moss or algae. Or cells that just forgot they were supposed to be part of a general body plan.

I think my main worry about the endo part is just that it will keep growing and eventually damaging organs through that. and that while obvious locations were checked both the mri and surgery checked my lower belly.

Unfortunately it can also go its merry way into your diaphragm, stomach, lungs, veins, heart, brain. If i didn't really notice it was growing where they removed it now, who says i'd notice anything before it did irrepairable damage anywhere else?

thankfully veins and brain seem rare and hopefully are, rather than just neglected in medical research. I suppose it is at least useful to know. I guess. Oh well I'm going on dienogest after lucrim so hopefully that will continue to tame it somewhat.

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thinking about surgery (which by all accounts seems to have gone very well!) and memory. The idea of a gap in your memory in which things happen to your body outside of your control is so easy to frame scary but in reality i genuinely could care less what exactly happened as long as it was a useful part of surgery - which I imagine is how most people with good outcomes feel about it! The actual sensations i remember were: going under (this felt like cold black water running up my arm until everything went black) the bed moving and their pulling on something (inside). Wrt the latter I have no idea if it is an actual memory or something my mind made up and I forgot to ask about it. I remembered this sensation when I first woke up; my memory of it now is only of the first remembering. I think it's not unlikely some tugging was in fact involved given the unholy mess inside me but I have nooo idea if memory formation works under those circumstances at all. And of course it would make sense to dream of surgery when you're going under for surgery.

Really inconsequential but interesting (if probably to me alone).

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really kind of in pain because of the medication delay today which is bad (things should be stable and not bleeding in there especially right before surgery) but i guess useful in the sense that lately surgery has felt like taking a huge risk with my health and life for frivolous reasons but -- of course i can't have lucrin injections forever. And i guess this is the return of the level of discomfort i am (when it persists) very good at pushing away until I genuinely describe it as "no pain." It would be bad for it to remain.

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lack of posts on this blog is because i've been blissfully symptom free for a while. Posting this just to say once again don't let the scaremongering online about lucrin and gnrh agonists get to you! they made my life so much better! It does help to have an add back hormone like tibolone but the fact that I'm not tired or bleeding all the time is obviously a huge improvement.

I <3 modern medicine I <3 chemicals I <3 unnatural hormones <3

not suffering any noticeable side effects. This can't last forever but I really love what it's doing for me and i'm super happy with my treatment now. :)

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ok i understand that the vitamin post was a joke. however. I think i actually was lacking The Vitamin it's just that my vitamin was a GnRH agonist. I didn't think i was actually feeling that bad physically but it's deceptive when your "really bad" is through an accident of genetics and luck still seemingly not very dramatic because i could still do a lot, in comparison to other people who are not even ill (or think they aren't). It took a while to really take and I'm sure it's terrible in the long run but i feel really good. The motivation motor broke sensation is gone because as it turns out half of it was brainfog and physical exhaustion from endo. I have developed a lot of ways to get the motivation motor going despite that but working to start first is exhausting in itself.

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god i love not having a period. Best compensation for months of blood loss on end imaginable but also just wish i could maintain this state consequence free forever. I don't want menopause and its consequences but i would like to push the pause all that shit button for 20 years however. Human lives should be thrice as long as they are and we should get to choose our fertile periods at will. Pause that flip it stop it start it.

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this medication is so effective i genuinely just feel good again, which is great, really happy it works. I genuinely don't feel ill now. Also great. This does mean I'm so so tempted to try putting surgery off now. This would be unwise because to take this longterm would likely be very very bad for me even with all these supplements etc... but.

It's harder to be accepting of the fact that you need major invasive surgery when you feel pretty good. It's a risk! Lots of things can go wrong during and after surgery. I wish i could just take these injections forever without consequences of any kind instead of all that.

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hm ok i'm a week late with the lucrin injection and it's kind of incredible how obvious the mild returning energy level/cognitive symptoms are. I had a lot of trouble getting anything done yesterday and even more so today because i couldn't focus on anything and felt extremely drained. More than brainfog, so bad that i ended up lying down at 21:00(!) and trying to listen to an audiobook; I wasn't sleepy but i kept sort of 'sinking' into this half-aware garbled sentences awareness and being surprised i'd arrived at the next chapter next time i was more alert for a few moments.

this is actually something i have experienced before but i attributed it to depression. It's kind of become obvious that suppressing endo also suppresses this, and that it's probably part of it. Which makes sense tbqh!

still doing pretty alright overall. :) really glad the suppression treatment seems to be working, still nervous about the upcoming surgery but hey. Another injection soon which will probably relieve me of random days like these.

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anyway yeaah lucrin (leuproreleline) has a bit of an evil reputation and you do have to be careful but... it does work. I underestimated just how miserable the constant blood loss made me i think, even when complaining on purpose. It wasn't just frequently scary but also just uncomfortable and gross basically all the time. Ruined last summer for sure. I never got to swim in the sea or walk around carefree. I didn't dare travel solo because i could pass out at any time. Etc. So yeah the scary medication is worth it.

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anyway fingers crossed but the main reason why i have hardly used this complaint blog lately is because there isn't anything much to report. I stopped suddenly using large amounts of blood which has been fantastic for my overall wellbeing. It's probably the lucrin but it only started helping about about the 3rd injection. On the 4th now.

Nervous about the surgery but i can't (healthily) be on this longterm so it's kind of unavoidable. They're going to check my kidneys again next week. I have got to say i really love not having periods but again, the health effects of that longterm would not be desirable whatsoever. I haven't really had side effects aside from mild cramping and an absolutely shit mood about 2 days after the injection. No hair loss or anything like that. Then again I'm also on tibolone specifically so things other than my evil egg et all do get their estrogen/testostron so that's probably why.

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tranexamine worked for a few hours then when i was washing my dishes and tidying up the kitchen i suddenly started bleeding so quickly it was literally dripping down my legs to the floor. 🫤 i was prepared this time but it's just too much.

took more tranexamine, which did work well enough this morning. The issue is that it's past 0:00 now and i really want to go to sleep. But that feels a little dangerous given that if it doesn't work and this just keeps going i will bleed out i think. Oh well. More late night seneca tragedies reading it is.

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save me tranexamine

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Ok back to complaining. Why is there a pool of blood. Lucrin injection please explain

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uncomplaining update: i think it's working finally. :)

haven't been losing blood lately and the fatigue hasn't really shown up either. Not having to replace a decent % of your blood every day probably helps with that. No more cramping, no pain. Now the only thing I have to watch out for is losing bone density but if the next few months are like this I'll be fine until the surgery.

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Ok so yes this is a complaint blog and of course i mainly feel the urge to post when events like waking up in an unscheduled pool of blood happen, as per my last 20 posts.

But!! It must be said. I think the lucrin + tibolone combination is already reducing the fatigue a little, which might be because the lack of estrogen now available to my uturus should reduce inflammation. Tibolone is such a strange medication and i wish i understood how it can affect organs so differently.

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Augh. I thought it was just the few days of stopping birth control and lucrin starting to show its full effects messing around but i woke up in a literal pool of blood at 5:30 again today. 😓 just took tranexamine about it and hope to sleep an hour more and not bleed out while i do that.

Why is this happening though. I'm on a GnrH agonist and by now it should be working. It doesn't make sense.