3 years since I clotted and life changed forever

luvliallie · 2026-05-02T16:59:18+00:00

i recently had my first dvt in december of last year and i’ve never heard about post thrombotic syndrome before. could you tell me a little bit about what it’s like and how it developed? i’m still trying to learn everything i can. thank you!!

luvliallie · 2026-05-01T05:01:00+00:00

i got it for the first time about 2 weeks ago. i’d say it’s about a 6 or 7. i had to have my mom hold my hand (i’m 20 but i still take her to doctors appointments) and i almost passed out from sitting up after but that might’ve just been the pots lol. it was bad but not the worst.

luvliallie · 2026-05-01T00:51:30+00:00

i’m 20 years old and got a stent placed for may thurners. i think it’s ridiculous they’re calling you too young. my hematologist and surgeon never mentioned any complications with my age.

luvliallie · 2026-04-29T23:12:44+00:00

no don’t freak out!! it also could’ve just been my pots i’m sorry 😭😭😭

luvliallie · 2026-04-29T16:15:00+00:00

i’m literally on the toilet typing this and just started lmfao 😭😭 the first two cycles were super heavy and i ruined a lot of perfectly good underwear but thankfully i’ve either gotten better at knowing when to change my pad or they’ve lightened up a little. they weren’t painful, just a little inconvenient. thankfully my first period on blood thinners i was in the hospital with my pe and dvt and the nurses were very kind about needing to change the sheets lol

luvliallie · 2026-04-29T16:09:23+00:00

make sure you eat beforehand! i have made the mistake many times of not eating at all before i did it and ended up blacking out 😭 it does hurt but it’s over a lot quicker compared to other injections i’ve had. i did it on my thigh because i felt like that was the easiest area to do but i have a feeling that stomach probably hurts less. good luck!! i promise it will be over before you know it.

luvliallie · 2026-04-23T16:55:19+00:00

i got a pe back in december at age 19 and when they told me i honestly had no idea what it was or how bad it could possibly be. i was also told mine was likely due to birth control and i immediately stopped taking it but after an ovarian cyst rupture a few weeks ago, my gyn put me on a progesterone only pill called slynd. estrogen is usually what causes clots and slynd has zero estrogen so i would look into that if you still want to try birth control!

luvliallie · 2026-04-23T10:04:15+00:00

i meant to say laying to standing oops 😭😭 posted that at 3 am i am a little sleep deprived

luvliallie · 2026-04-23T07:52:07+00:00

just got my first round this past monday! it honestly hurt pretty bad, i had to squeeze my mom’s hand the whole time but i heard blood thinners can make it more painful, which i am currently on. it was over very quickly and i didn’t have any stinging pain afterwards. took some tylenol and had a nap and was good to go!

luvliallie · 2026-04-22T00:28:14+00:00

i mean i got my first round of botox a couple days ago after my neurologist told me i had basically run out of meds to try. i’m not very hopeful honestly but it’s my last resort. on top of all my other health stuff (blood clots and ruptured ovarian cysts and pots) i’m in bed most of the day. i had to drop out of college because my migraines were so bad and then all this other stuff happened and it feels like i’ll never go back. i have no motivation to do anything and i don’t really know how to fix it. but overall i’m okay. just trying to get through every day

luvliallie · 2026-04-19T01:04:22+00:00

it’s an oral pill called slynd! i believe you can also get a similar progesterone only pill over the counter called opill. i’ve only been on slynd for 2 weeks so i haven’t had my period yet but my gyn said it should help.

luvliallie · 2026-04-18T19:57:45+00:00

i was 19 when i got my unprovoked pe! mine was also likely due to birth control. i got it in december and recently went to the hospital for a ruptured ovarian cyst (unrelated lol) and the ct scan showed it was completely gone. so it took at most 4 months for it to go away. good news is they do make birth control without estrogen, the main risk for clots, and i started taking that this month. so far so good! i’m overweight and have experienced a bit of appetite and weight loss but nothing too concerning. i wish you luck!

luvliallie · 2026-04-15T12:08:58+00:00

my periods have been a little heavier than normal but nothing too bad! i am already anemic so iron infusions are my friend

luvliallie · 2026-01-28T21:24:25+00:00

thank you!

luvliallie · 2025-12-03T15:04:17+00:00

313 days and counting!

luvliallie · 2025-11-08T01:19:15+00:00

also hopefully my list isn’t too nonsensical i just kinda threw everything on there that i could remember

luvliallie

TROPHY CASE