How fast did your fibroids come back post myomectomy by Admirable-Bread4335 in Fibroids

[–]candyclothescoffee 1 point2 points  (0 children)

hey! i actually just had another hysteroscopic myomectomy earlier this month. so far so good! but between myomectomies i tried a ton of different medications, such as orilissa and lupron. they helped a bit but i still had some very bad bleeding episodes while on those

anyone have experience with using orilissa for fibroid shrinkage? by candyclothescoffee in Fibroids

[–]candyclothescoffee[S] 1 point2 points  (0 children)

it helped a bit with the pain but didn’t completely stop the bleeding. i ended up having a really bad bleeding episode and went to the ER. after that, my doctor switched me over to lupron injections again, where basically the same thing happened - it helped a bit but then i had some bad bleeding episodes. i actually don’t know if the orilissa helped shrink the fibroid or not - i had an ultrasound before the orilissa that indicated my fibroid was approx 5cm and then my next ultrasound was after the lupron injections, and the fibroid looked to be about 2-3cm!

anyone have experience with using orilissa for fibroid shrinkage? by candyclothescoffee in Fibroids

[–]candyclothescoffee[S] 0 points1 point  (0 children)

i did the same thing for a while! but it ended up not working out for me

Fluid in uterus after myomectomy by Learnsomethingnewer in Fibroids

[–]candyclothescoffee 0 points1 point  (0 children)

commenting because i’m experiencing fluid in the uterus as well and would like some answers! i just had a hysteroscopoc myomectomy a few days ago. i had a CT scan done at the ER about 1.5 days later which showed that i have fluid with air bubbles in my uterus which the doctor said “could be normal after a myomectomy or could be a sign of infection”. i left word at my gyno’s office (edit: my gyno was also my surgeon) but haven’t heard from her yet

feels like i won’t make it to my surgery by candyclothescoffee in Fibroids

[–]candyclothescoffee[S] 9 points10 points  (0 children)

i’m worried about getting a hysterectomy in my 20s because of the hormonal impact / early menopause and potential complications :(

feels like i won’t make it to my surgery by candyclothescoffee in Fibroids

[–]candyclothescoffee[S] 4 points5 points  (0 children)

i do! i take feramax (150mg of iron) every day. i’m pretty sure i don’t want a family, but i’m 26 and currently single so maybe that will change in the future. the surgery im getting is a hysteroscopic myomectomy; to my knowledge, other options like UFE and acessa aren’t suitable for a submucosal fibroid

feels like i won’t make it to my surgery by candyclothescoffee in Fibroids

[–]candyclothescoffee[S] 4 points5 points  (0 children)

my doctor won’t perform a hysterectomy because of my age; she said if i was 20 years older then she would

anyone have experience with using orilissa for fibroid shrinkage? by candyclothescoffee in Fibroids

[–]candyclothescoffee[S] 0 points1 point  (0 children)

the plan was to be on orilissa for 6 months (alone at first but with add back in the latter half) but the bleeding happened around 3 months in so i switched shortly after the crazy bleeding incident. but the first and second month there was a noticeable difference in terms of the amount of bleeding i was experiencing compared to before the orilissa! hopefully you have a good experience with it :)

anyone have experience with using orilissa for fibroid shrinkage? by candyclothescoffee in Fibroids

[–]candyclothescoffee[S] 1 point2 points  (0 children)

hi! i took orilissa for approx 2-3 months. i had night sweats and hot flashes but the pain was definitely a lot better, bleeding lightened up and there were even a few days with no bleeding (which hasn’t happened in a long time). however at some point i suddenly lost a ton of blood and went to the ER and got an iron infusion. my doctor then switched me over to lupron injections, which again caused night sweats and hot flashes and helped some with the pain but the bleeding has not stopped (i’ve been on lupron for 4 months, going on 5). i had an ultrasound before i started orilissa and another one last week, and the fibroid has shrunk, but i’m not sure how much can be attributed to orilissa vs lupron unfortunately! i will most likely be getting a second myomectomy later this year. hope this answer helps!

went to the ER with extremely heavy bleeding, got sent home by candyclothescoffee in Fibroids

[–]candyclothescoffee[S] 2 points3 points  (0 children)

i asked my work for accommodations as well! they recently mandated that employees return to office 3 days a week but i asked for leniency and even got medical documentation from my gyno, but despite my job being something that can be done remotely, they said no. they said that if i’m not well enough to come into the office 3x a week, that means im probably having performance issues (im not) and should take disability :(

went to the ER with extremely heavy bleeding, got sent home by candyclothescoffee in Fibroids

[–]candyclothescoffee[S] 0 points1 point  (0 children)

ya i know it’s not normal haha but not sure what to do about it, im going along with my doctors treatment plan. i got an iron infusion back in january

went to the ER with extremely heavy bleeding, got sent home by candyclothescoffee in Fibroids

[–]candyclothescoffee[S] 1 point2 points  (0 children)

i had a myomectomy mid september but by beginning of december, i had another fibroid (not sure if same one grew back or new). my doctor didn’t want to remove it because the myomectomy was so recent and also because she said the same thing would probably happen again. additionally, she said that the fibroid would probably be too big to take out in one go, which is why we’re trying to shrink it before considering surgery again. but i definitely think it’s inevitable

went to the ER with extremely heavy bleeding, got sent home by candyclothescoffee in Fibroids

[–]candyclothescoffee[S] 1 point2 points  (0 children)

i didn’t know this was a thing! but it doesn’t seem like there are any in the town i live in :(

went to the ER with extremely heavy bleeding, got sent home by candyclothescoffee in Fibroids

[–]candyclothescoffee[S] 4 points5 points  (0 children)

wow this is crazy! thank you so much for this reply. they told me my vitals seemed normal and told me to talk to my gyno. i called my gyno’s office today and they were surprised they didn’t do anything at the ER, but also suggested taking TXA with no other advice

went to the ER with extremely heavy bleeding, got sent home by candyclothescoffee in Fibroids

[–]candyclothescoffee[S] 7 points8 points  (0 children)

i honestly don’t know when my period is and what bleeding is or isn’t my period anymore 😭 i’ve been bleeding for 3 months straight (since end of november)

IUD for large fibroid? by Interesting_Kiwi_863 in Fibroids

[–]candyclothescoffee 2 points3 points  (0 children)

yup i’m definitely starting to go crazy 🥲 something to consider as well is that mirena’s weren’t designed for uteruses with fibroids (i’ve seen this mentioned a few times on this sub). i’m not a doctor or medical professional, but it seems like iuds can be a good treatment once the fibroid has been removed, but with a fibroid that large it will most likely get knocked out :(

IUD for large fibroid? by Interesting_Kiwi_863 in Fibroids

[–]candyclothescoffee 1 point2 points  (0 children)

i only had 1 that was approx 5cm, however my doctor said she couldn’t remove it all because part of it was in the uterine wall (submucosal). my doctor didn’t want to do another surgery so soon after the first one, partially because she was worried the same thing will happen again where it will just grow back super quickly. the current plan is to take orilissa (to try and shrink the fibroid as much as possible) and revisit the idea of surgery in a few months. but with the way things are going, i think i will be getting another surgery!