We're in for another two weeks of struggling, yet we are also never alone in these struggles. I hope that all of you find some respite despite the issues you're facing, and that you know you are appreciated, loved, and respected here.
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CW: heavy body dysphoria and associated rage/anger/hatred
The endometriosis diagnosis has been keeping me in a constant state of near-panic for the last two weeks. It brought so many painful and taxing memories back, made me realize a lot of things that I hate about myself might just be caused by the endo. It's... it's a lot to deal with, and I don't feel like educating myself is making me feel better in any way. I don't even feel like learning about this chronic disease makes handling it easier. On the contrary, somehow, because all drug-related treatment options I already got for other problems before the diagnosis and these drugs made me feel so much worse. I remember being not even a teenager when I got my first incredibly painful period and all I could think was "I hope I can remove this shitty organ as soon as possible". And now they tell me that removing the organ doesn't make anything better. I also really hated growing into my boobs, as they made me feel like I was losing myself and becoming someone I didn't like or wanted to be (they still do to this day whenever they start hurting during the cycle). I'm afab, and for usually half of my cycle, I actually enjoy being a woman, dressing up, makeup, acting foolishly girly, all the regular stuff, you know. The other half, I'd rather be anything but a woman, and it involves a lot of self-degradation. For a long time I thought I might just be an egg, but now I realize that it might just be a disease making me hate this part of myself. Maybe being a woman doesn't have to be that bad. However, with the shitty treatment options I have available, I really don't see how I could ever get in touch with a body that again feels like it has betrayed me. Chronic condition number three kind of makes me doubt this hunk that breathes and eats for me is really supporting me.Anyway, this is a long and hateful rant, so please, if you're not feeling well yourselves, don't read it right now. I just wanted to vent. Love you all
So sorry you've got all this going on. It's awful coping with chronic debilitating disease in a world with crappy treatment options. I hope you can get some relief.
Solidarity in the painful struggle, sister. I know I mentioned this to you before but that rant sounds a LOT like what that ex of mine used to say. And, I will again harp on the multiple medical opinions. She had been told the exact same thing about removal not improving anything. Then, magically, a new Dr. at a "better" hospital, had a completely different diagnosis. Then a third Dr. in a private practice had some completely new shit to say. I know its no solace, but don't lose hope that a better future and an end to some of this misery is out there for you.
I honestly doubt there is an end to the misery out there, but getting a second opinion is a good idea still. Problem is getting appointments. If I apply for any, I would only get one after the surgery date the first hospital set, so naturally I have to cancel the surgery, but if the next hospital tells me that surgery without hormonal therapy is possible, I just wasted the chance to get rid of the pain earlier. Or, alternatively, they say they can do a hysterectomy, but will also force me to take hormonal supplements. I did some research in the meantime and there is no way someone removes female reproductive organs without hormonal supplements. And that's what's driving me crazy.
Yeah its an absolute minefield. She was down the rabbit hole quite often trying to do something to get help. I presume, given your statements about applying, you're not in the US? I suppose that would make it more complicated to get multiple opinions quickly. The pain vs. waiting tradeoff is a real motherfucker, and something I'm dealing with myself at the moment. All I would add, is if there is any doubt in your mind, hunt for more info or more opinions. Specialists, OBGYN's, anyone you can get to give you insight. I had a surgery where there was no defined outcomes and I "thought" the specialist was well informed and smart. Turns out he was a complete and total asshole, and it ruined my life. So there's two sides to every coin.
Rambly-long answer
Yeah, I'm not in the US. Here it's a waiting game, and to get this lousy appointment, I had to wait for 1.5 years. On the flip side, I lived with excruciating pain for decades at this point, so what difference do a couple more months make? It's not a nice prospect, but it is what it is. I don't doubt the diagnosis, in fact, I have been assuming that this is what I have for I think 6 or 8 years? I knew from the very beginning that my pain wasn't normal by any standards, especially since I had classmates in high school who would just participate in sports class without painkillers. There's a shitton of specialists out there who don't deserve the title, so I'm with you on that. For what it's worth, I can now confidently say I have endometriosis and can use it as a proper medical excuse for when I need it. As to treatment... you know the minefield it is, and I'll keep looking, but I doubt I'll be able to get anything before the surgery date, and I need to decide if it's worth it or not. Nothing seems worth living with this pain, but at the same time, none of the options are good. Maybe the people from this pain management center at the hospital will be able to help with one of the major issues at least. Anyway, I'm rambling, but thank you for listening. <3I'm also sorry your medical care history is so bad. I can imagine how much of a toll it must be taking on you
You're not rambling and its not a bother. I know its stupid to say out loud by try to remember that a diasnosis does not equal a fixed result. You have endo, you know you have endo, you've known for years you have endo. What to DO about the endo, is unfortunately, a completely different story. Its insane you had to wait that long so I absolutely understand your dilemma there. I'd just talk to your specialist and just bear down on the details about the potential outcomes of the surgery and the potential alternatives. Come armed with other options and discuss it with them step by step. If they give you a single iota of pushback, you double down and talk through everything you need to. If they don't want to do this, then you know you've got the wrong doctor. They get so one-tracked that they're the bestest and smartest little boys and girls that they absolutely hate having their opinions questioned.
It's a whole heck of a lot to process, both internally and dealing with the systemic problems exacerbating everything. It's not fair that our bodies give us these additional burdens to carry. It sucks, and it's okay to say it sucks. Hugs, if wanted comrade.
Hugs are always appreciated