Help now told no endo.....: Hi all I had a... - Endometriosis UK

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Help now told no endo.....

Jcr87 profile image
5 Replies

Hi all

I had a diagnostic lap in 2010 they confirmed endo

My pain is now unbearable

Just had lap on Thursday and they said no endometriosis how is this possible?

Has anyone else had this? Any advice welcome

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Jcr87 profile image
Jcr87
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5 Replies
hm89 profile image
hm89

It's possible you could just have a small amount and your surgeon couldn't see it. My first surgeon said I had adhesions but they couldn't confirm endo and then second confirmed it. He said it wasn't a massive amount but there is no relation to the amount of endo and the pain that it causes.

Peebles2sarah profile image
Peebles2sarah in reply to hm89

That is my thought process as well. Or maybe it hasn’t grown back! It is possible that after the first lap that it doesn’t come back.

hm89 profile image
hm89 in reply to Peebles2sarah

Maybe. I think I was lucky with the timing of my lap. It was the day after my period ended and the surgeon said I had a lot of ‘old blood’ sat in my pelvis which can’t escape and causes a lot of pain, but like I said, not a lot of actual scar tissue. I don’t know if that would have been there further away from my period. Not much help for you but if you’re in pain, you know your body so don’t let them tell you it’s nothing and stop treating you!

Peebles2sarah profile image
Peebles2sarah in reply to hm89

Oh of course, and your pain is still absolutely valid! Endometriosis deposits themselves are not scar tissue (they can cause scar tissue) and the deposits themselves can be small/hard to see. It is possible you had small amounts that were missed or that there is another cause of pain. Hopefully this will be enough to solve your pain (trapped blood can be extremely painful!!!) if not, Just be firm wth the doctor that they have to come up with a solution to help solve your pain.

Knina profile image
Knina

I had second lap in February, but still have pains. In my case it seems like endo was silent for many years, not too much pain, but then it became very bad last fall. I don't feel like the surgery helped a lot. The surgeon said she barely found anything. I still have pains, but now I am glad that I am not the only one and it is not in my head.

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