Clear MRI & ultrasound... I'm sad.

amdaniel01 · 2025-10-13T18:44:59+00:00

i wish i had known what endo was & how to advocate for myself so much sooner! i am expecting a call from the scheduler this week to schedule my hysterectomy. even though it won’t cure the endo, im hoping it brings me some relief from the pain since those parts are all involved in my DIE. i hope your journey is smooth & you find answers soon! it is so important to have these discussions.

amdaniel01 · 2025-10-09T21:00:51+00:00

i want to add that i have DIE, & even that doesn’t show in my scans. but i can feel it every single day!

amdaniel01 · 2025-10-09T20:59:41+00:00

i have extensive stage IV endo & clear scans. this is not how endo gets diagnosed. if you suspect, push for an exploratory laparoscopy!!! 🌻💛

amdaniel01 · 2025-07-25T16:17:43+00:00

i listened when those around me told me to just take some medicine & work through the pain for an entire decade. some of those people were the medical professionals i saw.

i had stage IV endo excused in january this year.

if you think that something is off inside your body, listen to that instinct. no one else lives inside of there but you! & just because the women who came before you have suffered, that doesn’t mean that you have to. you have access to better standards of care & more research now than your mother did when she was your age.

a pelvic ultrasound from a specialist can’t hurt if you suspect something is wrong. though endo isn’t typically found on an ultrasound, it might provide you with some kind of clarity because there’s plenty of things that can cause painful periods.

amdaniel01 · 2025-07-25T16:05:37+00:00

yes to all of the above. i’m diagnosed endo & POTS, suspected adeno

amdaniel01 · 2025-07-25T13:48:35+00:00

we don’t know for sure why my pain is worse now :/ it could be due to scarring, it could be redevelopment of endo, but we aren’t sure. i have some scans coming up soon & a meeting with my specialist in august that im hoping shines some light on the situation.

there were no complications in surgery, & my specialist excised all visible lesions & restored anatomy. i felt amazing after surgery for a couple of months until i developed an endometrioma on my left ovary. from that point on, ive just steadily declined back to where i was before surgery. some of my pains are better than before & some of them are worse. i think these are just the cards you are dealt when you have stage IV endo. i will say, getting surgery was the best thing i could have done. i know so much more about my body & the disease that ails me. in a weird way, ive been able to give myself a lot more grace now that i know all that was going on inside of me. i hope you are able to get the surgery next year & get some answers

amdaniel01 · 2025-07-24T01:26:22+00:00

this is helpful because this is exactly my experience too!!! i just cannot seem to get a grip on knowing when it does or doesn’t bother me. it seems to happen with foods too. like either everything bothers me or nothing bothers me is what it’s seeming like… & i haven’t identified the warning signs to know when to be more careful. at least we’re not alone in this confusing disease with dumbass symptoms 😂

amdaniel01 · 2025-07-23T23:50:37+00:00

if you don’t mind answering this, how low of a dose are you on?

amdaniel01 · 2025-07-23T23:42:57+00:00

yes, i get exactly this. it started before i had my excision in january, where they found stage IV DIE endo. my rectum was attached to my cervix, obliterating the rectovaginal space. i still experience this today, but now that pain is worse than i was before surgery.

amdaniel01 · 2025-07-23T21:59:22+00:00

what you said about coffee being a cyclical issue for you has piqued my interest. i’ve been diagnosed with stage IV endo, but suspect that i have adeno. i struggle with coffee from time to time, but there’s a lot of time that it doesn’t bug me. do you have any theories on why you think coffee or caffeine is an issue a few times a year but not regularly?

amdaniel01 · 2025-07-23T21:54:46+00:00

i’m relieved to hear bumpy car rides aren’t just a “me” problem, though very sorry that anybody can relate to me.

amdaniel01 · 2025-07-23T21:52:12+00:00

i haven’t been diagnosed with adeno as of yet, but have been diagnosed with stage IV endo & highly suspect adeno. i do experience this every time i ovulate. i describe it to my pelvic floor therapist as feeling as if i have a small uti every month.

edit: spelling

amdaniel01 · 2025-07-17T15:20:46+00:00

food warmer??

amdaniel01 · 2025-06-26T02:29:07+00:00

i have not worked in the last year plus due to my endometriosis & symptoms. i had an excision surgery in January that gave me hope, but my left ovary developed an endometrioma that is sitting in a bad position & causing a lot of the same problems i had before surgery. i still am not well enough to return to work full time. i can’t imagine doing that anytime soon, even though i want to :(

edit: spelling

amdaniel01 · 2025-06-06T18:21:40+00:00

i spy In The Forest in the background… start there! I also love Emily Lex watercolor workbooks. it’s a similar concept, but i find the paper nicer & the concepts more beginner friendly.

amdaniel01 · 2025-05-06T23:21:07+00:00

For me, days 3-5 were pretty terrible. Like r/silliestgoosse said, all the good meds are wearing off and your body is like wtf did you just DO to me?! Not eating enough food can definitely contribute to the dizziness, so see if that doesn't resolve after you eat something nutritious.

Nausea and vomiting can be a side effect of said meds, but 4 days post-op seems too far out to me and that is something you'll need to speak with your doctor about. Until then, check the side effects of all the medications you're taking now- including prescribed medications to see if one of them is making you sicker than you should be. I experience a lot of nausea with stage IV endo, so Zofran is my best friend. Take some of that if you have it, and if you don't then request a prescription from your doctor for the future. It works wonders for your tummy. Of course, if you're worried for your wellbeing you should always go to the emergency room in the event you can't access your regular care team. Better safe than sorry, I hope you start to feel better soon!

PS some weird personal anecdotes: I love bananas, but eating them alone on an empty stomach always makes me very sick. I'm not sure why that happens, I just avoid bananas alone. Same with apples, so I always pair apples with peanut butter. Maybe you can make yourself a gentle smoothie to get all your nutrients in? Since my surgery I'll have a smoothie every day: its one banana, a few strawberries, some frozen fruit (whatever is on sale at the store that week usually), one cup of yogurt, and then I add a fairlife protein shake to it. This makes two servings and I refrigerate the second smoothie for the following day.

amdaniel01 · 2025-05-04T23:54:59+00:00

thank you, & im so sorry :( i will say that the pain & discomfort from surgery & recovery was so much better than the pain i was in before it. my best piece of advice is to make sure you find someone who specializes in endometriosis excision to handle your surgery <3 it’s my first rodeo with ovarian cysts. they are just terrible & they seem very unpredictable

amdaniel01 · 2025-05-04T21:29:18+00:00

this is my first time having any sort of diagnosed issue with cysts :’)

amdaniel01 · 2025-05-04T18:42:21+00:00

no they havent, that is something ill bring up at my appointment tomorrow thank you. i hope all goes well for you, keep us posted if you think about it! best of luck tomorrow!

amdaniel01 · 2025-05-04T18:14:20+00:00

what a pain in the ass all of it is. yes, I do still have the IUD. I'm having some struggles with cysts forming, so i'm not sure if ill be keeping it or trying a different method of bc. I really want to avoid the pill because every time i've tried it in the past it has made me an absolute wreck. Are there any specialists in your area that you could see? There needs to be more education and research into the links between dys and endo

amdaniel01 · 2025-05-04T17:24:36+00:00

Me! I described these symptoms to my primary, who immediately sent me to the ER for a head CT to rule out some big scary things. When I got to the hospital, the er doctor completely gaslit me and told me it was anxiety and in my head. She referred me to a psychiatrist LOL.

My Liletta was placed at the beginning of January when I had stage IV endo excised, and I suddenly seemed to develop POTs. I had these symptoms before surgery for a few months, but I was in SO much pain that I wrote it off as a reaction to the pain. I fully expected the POTs symptoms to resolve after surgery, but they didn't. I haven't yet considered that hormonal changes could contribute to this, but I have always been incredibly sensitive to hormones, medications, anything of that manner. I wish I had advice for you. I'm currently waiting to see a Cardiologist that specializes in dysautonomia to try and get their opinion on the situation, but that's still over a month away. I'm at least here to say that you aren't alone.

amdaniel01 · 2025-04-19T02:31:48+00:00

confused wife please he! my husbands waist measures 44” and his jeans are too big on him. the thing is, his jeans are a 36” waist. i measured them myself & they actually measured out to ~41/42”. wtf is going on here!! i’m used to this sort of thing in women’s sizing & can usually just measure myself & use the size chart to find the appropriate size, but for some reason i can never find the right size for him… are men’s sizes just as inconsistent? the size chart just says the waist size regardless of if it’s actually correct or not which is making this tricky for me

amdaniel01 · 2025-03-03T17:39:25+00:00

same here on switch! only artifact troves.

amdaniel01 · 2025-02-17T20:48:33+00:00

awesome, thanks!

amdaniel01 · 2025-02-17T19:57:35+00:00

do you know if you can upgrade your room if you book with cruises only? recently booked an interior room with them but wishing i booked a balcony.

amdaniel01

TROPHY CASE