@hobbieswithcaroline: I had my first diagnostic endometriosis excision surgery and bilateral VATS on October 21st. My surgeons discovered endometriosis infiltrating both of my lungs, and growing on my diaphragm and heart (pericardium). They had to remove parts of both lungs, perform a wedge resection with about 60 staples on each lung, and I woke up with chest tubes on either side. My surgeon also removed endometriosis from my ovary, bladder, and took out my appendix, which was adhered to my colon by endometriosis. They also discovered two fibroid tumors growing on my uterus, which were removed as well. Going into a diagnostic surgery having only picked up minimal endometriosis on imaging, and waking up to find it’s growing on my heart, was devastating to say the least. The location of the growth was too risky for my surgeons to remove, so it will have to treated with hormone suppression for the time being. Upon waking up and discussing the findings with my team, my doctor let me know how proud of me he was for advocating for myself. I knew something wasn’t right, and I continued to fight for my body until someone else believed me too. I’m so glad he did. #thoracicendometriosis #diaphragmaticendometriosis #pericardiumendometriosis #deepinfiltratingendometriosis #endometriosissurgery

Caroline🌷

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Saturday 24 October 2026 19:55:18 GMT

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Comments

Andrea Dyson Kempf :

I just googled what actual endometriosis looks like and now I’m even madder. It’s literally dark brown connective tissue that could not be more visually obvious. They really just don’t give af

2026-10-25 01:48:30

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🫯 Kay 🫯 :

It spreads!? On my way to search endometriosis symptoms

2026-10-25 03:33:20

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Chelsea🌼 :

This is my first time learning Endo can infiltrate other organs, especially those such as heart and lungs 😳

2026-10-24 23:54:46

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Jenna :

Saw a story of a MAN who had it because he received an organ transplant from a woman who had it and it just kept growing.

2026-10-24 23:38:16

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bluetit :

how is endo not classified as cancer? It acts the same way

2026-10-25 09:22:37

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Brooke Ann 🌻🐝 :

How is it not considered cancer!!

2026-10-24 22:42:39

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snowgravcs :

yet male pattern baldness is more researched than endo. i’m so sorry.

2026-10-25 22:25:57

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🧍🏽‍♀️ :

Any condition that is specifically only linked to women is so understudied is so annoying but then when it comes to abortion thats where everyone has an opinion and wants to put their input

2026-10-25 00:42:46

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A Bored Blue :

My 93yo OBGYN gpa wrote an article about identifying endometriosis in 1974! When I saw that on his bibliography I actually screamed. I will never not be furious we have not found a solution in the over FIFTY FUCKING YEARS we’ve known about it.

2026-10-25 09:22:31

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Jelly Belle :

my OB said "endometriosis wants to be cancer so bad" it really will grow anywhere and everywhere

2026-10-25 01:13:26

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raccoon-princess :

to those shocked that it was in her heart and lungs, I'd like to horrify you with the fact that endometriosis has been found on the brain

2026-10-25 09:24:54

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Dani :

I cried so hard after my surgery knowing I wasn’t crazy. Mine was in my bladder and colon. Wishing you all the best in your recovery

2026-10-27 01:04:26

KitKattSmith🇦🇺🏴󠁧󠁢󠁷󠁬󠁳󠁿 :

endo girlies: maybe I'm just faking - surgeon: there's endo on your heart/spine/lungs/brain -

2026-10-27 00:45:07

Anthea🍉 :

I know someone who had endo tissue in their brain. society is not taking this as seriously as it should

2026-10-25 07:55:07

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Alex E Miles :

A good surgeon willing to do exploratory surgery is worth their weight in gold. My quality of life is infinitely better because of a surgeon willing to just “take a look on the inside”

2026-10-24 22:47:45

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Amy Whitmer :

hugs. heal well and quickly. hope you are finding some relief after all that.

2026-10-27 00:55:51

EJ :

It was in my bladder and I had a total hysterectomy and now it's come back in my colon...

2026-10-27 00:04:01

Bloomin' Bee :

I was supposed to have my first ultrasound this morning after waiting 10 years for anyone to listen to me. Then I got there and it was cancelled. Why can't they just listen to us? Why do we have to wait years? for any kind of answer 😭 I wish you all the best sweetheart 💕

2026-10-27 00:43:41

user.7654389 :

it makes me so mad how little research this devastating condition has. and all the new confirmed research just not being used. ugh i js hope everything goes perfectly for you as it should

2026-10-24 22:34:40

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Everything was Magenta :

I've had 2 surgeries where they found endo. First was my hysterectomy. My surgeon said and I quote "It was everywhere." Took her an hour to scrape it all out. Second surgery, same doctor, it had grown back and glued my ovaries, bladder and lower bowel together. I have a third CT and untrasound next month bc we think it's grown back but this time into my spine. But it's not a cancer. I'm so tired.

2026-10-25 00:06:53

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Jacey Lynn :

It.. it can be other places?!

2026-10-25 23:06:19

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floo :

if men had endometriosis there would’ve be at least one concise pathophysiological explanation!!!

2026-10-25 14:54:07

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Holly :

Endometriosis as a concept is so crazy to me like what do you mean the body just forgets where to correctly grow your uterine lining

2026-10-25 09:49:00

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Hotgirlsreadbooks :

And I’m sure you were told everything was normal and you just had anxiety ❤️

2026-10-25 00:05:58

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TheCreator :

Endometriosis should be classified as cancer the way it can metastasize… fucking ridiculous that it’s not.

2026-10-25 17:06:59

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