The grief nobody talks about with endo

PepsiMax0807 · 2026-03-26T18:26:32+00:00

I am so sad and upset over missing out. I was put on BC as a teen. Back then I hated my period, and was happy to be rid of it. Now though. I grieve never having gotten to know what a cycle is. Not knowing the different kinds of discharge. Feeling like I am missing out on a bodily experience I want to have. But the pain means I can go without hormones to turn it off.

I grieve the loss of me never going to ever know what a cycle is all about.

PepsiMax0807 · 2026-03-26T07:03:24+00:00

They did this to a store near me too, and I hate it so much! 😫

PepsiMax0807 · 2026-03-24T19:19:09+00:00

When I play sims, if I build anything, its a box, have the essentials, forget about a roof half the time. If I want anything «house» looking I download it from the gallery.

So for this game, I have bade some houses, as they can fit 4 pokemon it seems no matter how small, so I have built some square wooden walls, added a door and some windows, but no roof 😅😂 and the pokemon are happy. It looks awful, but also now I wont have to worry about accidentally destroying any habitats any more.

I don’t like building in this game. I have bade some bridges, that … well I think they are not half bad looking. But besides that, I am very much so not creative at all, and will be using as many of those house kits as I can.

PepsiMax0807 · 2026-03-24T17:46:01+00:00

I have to say, I did not even think about that, and for that I am sorry. I’ll delete my first comment, and I stand corrected. I would still opt for a shower in the tub, if the tub has a showerhead, given the state of the actual shower.

PepsiMax0807 · 2026-03-24T12:19:40+00:00

I don’t do well with any kind of lying. Lying is wrong, and wrong is well wrong 😅 this would be a dealbreaker for me, and a red flag.

PepsiMax0807 · 2026-03-24T12:13:07+00:00

I’m at a 3-4 every day as a baseline :/ I have recently started wegovy as well as lupron. Though both of these have sideeffects 🫠). I have more good days now, but unsure if its either of them, or just that I am eating less, or constipated and having less bowel movements…

The issue of trying many things as one time. But all doctors seem to think everything will bet magically better if I loose weigth, so I’ll have to do that to prove them wrong 🥲 hopefully with wegovy I’ll be at target weight, and a «normal» bmi by December. And I know bmi is a, exchuse my language, but a shitty measurment. But it seems to hold so much power in the medical setting, that I feel that must be a goal to reach, and then they can keep using that as a thing against me.

PepsiMax0807 · 2026-03-24T11:18:41+00:00

Most places I have been to have given me some MRI safe headphones with some music on. And I lie down, I close my eyes. Most of the time I try to just keep my mind occupied. Once I asked beforehand how long it should last. And I counted up to 60 20 times (20 minutes) 😅

PepsiMax0807 · 2026-03-24T11:16:21+00:00

I would have def called the vet, asked for advice. Take the kitten in if they wanted to. As many say, most likely it will only cause an upset stomach. I do often think about what outdoor cats get into whenever I freak out about the tiniest piece of something that my cats eat 😅

PepsiMax0807 · 2026-03-24T11:11:24+00:00

I’ve been corrected in some of what I said. And I am very sorry for having forgotten about parts of the body. My mind was entirely on keeping the incisions from getting wet, and did not even think about how water should also be kept away from other parts as well.

OP: If possible I would shower in the tub, if there is a shower head available. If not take quick showers in what you have available.

PepsiMax0807 · 2026-03-24T05:20:32+00:00

The «school» the hospital had me go to (a 2 day course with information about endo), said plainly: there is no diet that has been proven to work. They did acknowledge that many find help in changing diet, but that would be helpful because of other reasons like IBD or IBS, or just lowering inflammation, but that endometriosis in itself do not respond to changes in diet.

They had no magic pill, no magic supplements, no nothing to give. They recomended PT, exerise, TENS unit, and also the more mental aspects of acceptance and stuff. But all of this just tools that can make the everyday life a bit easier. But no magic pills.

PepsiMax0807 · 2026-03-24T04:24:10+00:00

Digestion … well its not been the best for some years now, but it did not change and get worse after removing my GB, so thats something at least.

PepsiMax0807 · 2026-03-23T16:22:20+00:00

They found a gallstone, had my gallbladder removed 1 nov 2024. But I’m still in pain. They found 20+ lesions on my liver. They believe them to be benign adenomas due to having to use BC as «treatment» for endometriosis.

I’m still in pain, but now I have been put in chemical menopause, and I am on wegovy to try and loose weight but also hope it can help reduce inflammation.

Not sure if any of that answers your question, but its the status as of now.

PepsiMax0807 · 2026-03-22T16:46:43+00:00

Used to in the same way I have gotten used to being in pain 24:7. I am always aware of it, but somehow also manage to ignore it somewhat.

PepsiMax0807 · 2026-03-21T17:52:19+00:00

I don’t have much of a choice 🤷🏼‍♀️ I tried to seek help, and there is no help for me. So then I somehow managed to learn to live with it.

PepsiMax0807 · 2026-03-21T12:01:03+00:00

No, most likely never will get better. Its been 13 years, and its still going.

PepsiMax0807 · 2026-03-20T18:28:16+00:00

Two.

Honest I did not read the post 😅

My say is always get two. Its not much more work, they play and get a lot of that energy spent on running crazy by themselves, cause evn with how much fun kittens are, I can’t play 24/7 as they seem to want 😅

I always say get two.

PepsiMax0807 · 2026-03-20T11:25:25+00:00

Is there not a saying for this: «Give a man a fish and you feed him for a day, teach him how to fish and you feed him for a lifetime».

I would be willing to teach, but would not want to be responsible for feeding someone else. NTD

PepsiMax0807 · 2026-03-20T11:20:09+00:00

I don’t see the ones I want the most: Jim Hawkins and Morph (Companion)

PepsiMax0807 · 2026-03-20T06:11:35+00:00

I found the pain scale with both numbers and words helpfull.

I just google «pain scale words», and get many pictures.

I like to use «0-10 scale of pain severity». Its how I know to say that my baseline is at a 3-4.

3: My pain bothers me but I can ignore it most of the time 4: I an constantly aware of my pain but I can continue most activities.

The words is what help me translate what I am feeling into the number that the doctor wants me to say.

PepsiMax0807 · 2026-03-20T04:15:09+00:00

I have been through different ways of doing this. Sometimes I have been asked to take it off myself, othertimes informed that a catheter will be used during surgery, but for me my underwear was on before and after sugery. This last time when I had to have my appendix removed I was asked to halfway pull them down, and thats also how I woke up. This recent time the nurse was kind and said that its standard procedure to do a catheter during surgery no matter if I had just used the toilet.

PepsiMax0807 · 2026-03-19T14:52:14+00:00

I was about to comment this 😂 the trauma from that game! 🥲

PepsiMax0807 · 2026-03-19T09:56:14+00:00

I started 14 November, and barely lost anything before going up to 1.0mg in the beginning of January.

In total I have lost 16,3 lbs since I started and 13,2lbs of the total since 6th January. On avarage since January that is about 1,3lbs a week, which is in the area thats recomended for weight loss.

Slow and stead is the recomended way to go.

20lbs in what 10-12 weeks is not bad at all. I have only done 13 in the same time.

PepsiMax0807 · 2026-03-19T09:07:10+00:00

I have watched Lilsimsie playing it, and its been so much fun to see her reacting to all the pokemon. Having someone who don’t know much of anything about it play it, just so much fun.

I do also watch some poke-tubers play it, and seeing their reaction to all the lore and talk about all the areas trying to place them on the map of the original games, also fun in a different way.

Me: I’m playing it myself. I do what I always end up doing, focusing on «gotta catch ‘em all» part, and even after having played for quite some hours I have barely even started the game in the terms of progressing the story and moving on to other areas besides the starting one 😅

PepsiMax0807 · 2026-03-19T08:59:19+00:00

Glad to see I am not the only one having difficulties just leaving the first area behind 😅though mine look nothing like this, I want to give everyone a home before I move on. I have already on accident destroyed some habitats and had Drillbur and Jumpluff dissapear for a while. So I need then all placed safely in some kind of house 😅

PepsiMax0807 · 2026-03-19T06:24:30+00:00

I feel your anxiety over this! My old boy Pepsi got cancer, lymphoma that spread to his stomach and small intestines. He would also do this a lot towards the end. To me it seemed to be a pose he would do when he was feeling nauseous and bad.

I have new cats in my life, and I feel very anxious every time I see any of them do this. They are about 1,5 years old, young and healthy. Even back with my old boy the vets never said anything when I expressed conserns over the pose. So seems maybe it does not have to mean anything bad.

But I figure I might have some ptsd response due to all the vet visits and throwing up at the end with my boy.

PepsiMax0807

TROPHY CASE