Endometriosis Support Group

Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.

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Chocolate cysts - how do they form?

endowife
endowife
Ok, I had my post-op appointment and it was disappointing. The cysts and tissue they thought were endo were not.

So in April, they found and drained a huge chocolate cyst, removed my busted (and adhesion plastered) tube, and cleaned me up.
Since then (and before then too), my periods have been painful. They didn't find endo spots so they couldn't remove the endo itself either time.

Is it hiding? I am searching everywhere for answers. How are chocolate cysts formed? If I had a chocolate cyst it means I have endo and endo spots somewhere, right? but then why can't they find it?

(I sort of think I know that later q: is it maybe that my endo is hidden or too small to see? Could there be another explanation?)

All theories welcome!!!
Hope237
Hope237
Shoot I wish I had some answers for you. I'm not familiar enough with all if it yet. I hope you get some answers though. You can't live in pain like that forever. I have had pain for a long time and never knew it was endo! It's a nasty disease :( xoxo
deleted_user
deleted_user
I had a surgery when i was 19-a laparoscopy to diagnose me with endo. The surgeon didnt find anything. So a few years later I grew an enormous cyst and had another Lap to remove the cyst. I literally begged the surgeon to look for endo, and they finally found stage IV endo. So I was left wondering, "how did they miss the endo the first time, in a surgery?" Is it plain incompetance? I had endo everywhere, literally, and it wasnt hiding, the pictures from the surgery are disgusting! Yea, so I wondered what happened the first surgery. Granted the next surgery was a few years later, but im 100% sure the endo didnt just start growing to stage IV after the first surgery.

I had a specialist give me a great analogy about microscopic endo; he said, looking for endo can be like pouring salt in mashed potatoes, and then finding the salt in the mashed potatoes. That made it crysal clear to me that its a VERY tough disease to remove fully, and to find fully.

I dont have any idea how chocolate cysts are formed, I have them right now, and have had them removed. My only guess is it grows for the same reason the adhesions grow. But maybe when the endo grows on the ovary, it grows in a chocolate cyst form instead of adhesion? There are several different forms of endo. I have a large hole in my lower back, they call it a window. The endo ate away a hole!

I really hope you feel a lot better soon, and also find some answers! Ill look too, cause thats a good question. If I find anything out, or read more theories, Ill let ya know! Feel better!
deleted_user
deleted_user
Im sorry you are having to deal with this, and hope you can find out some answer soon! I remember my doctor saying that I didn't have enough endo to remove, but always found that so strange. Because I would be in so much pain I would pass out in class and couldn't function for days! So it could be hidden, hang in there girl! Things will get better!