'Hidden endometriosis'?: Hi everyone I'm... - Endometriosis UK

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'Hidden endometriosis'?

Hriverson profile image
2 Replies

Hi everyone

I'm due to have a hysteroscopy and the merina coil fitted on friday which I am absoloutly dreading! I got a letter through from the doctor a few days ago explaining what he was doing. I previously had a lap which found a serious infection but no endometriosis, he said hes convinced its there though as I have a family history and my symptoms match up. He says he is putting the coil in to treat 'hidden endometriosis' may sound stupid but can endometriosis be in places they cant see? Or is it just they cant find it? I'm so confused, I would prefer to have 10 more laps to find it than one hysteroscopy I'm dreading to try to treat it. Has anyone had any experience with this??

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Hriverson
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JuCeb profile image
JuCeb

Hi there. I've never had a hysteroscopy only ever laps so unfortunately can't comment on this, but I have just had a Mirena fitted for the first time during my last lap and so far so good. You will probably hear very mixed reviews about the Mirena some good, some bad, but just remember that everyone is different and so will react to things differently.

A good endo specialist would be able to see patches of endo provided they're looking in the right places. You can actually have endo anywhere in your body, although in the main it tends to focus around the uterine region. I have endo in my uterus, ovaries, bladder, bowel and Pouch of Douglas the place that separates the uterus from the bowel, however mine is completely obliterated so they are stuck together. So it is possible that you have endo they haven't picked up on.

Hope this helps a little x

Gio73 profile image
Gio73 in reply to JuCeb

Just wondering if your surgeon is removing your ovaries as well as your uterus? I have heard it's best to leave the ovaries alone and just remove the womb as it can affect many different systems within the body. I would check and ask your surgeon. I totally empathise with your situation.

Don't be afraid of asking and reasking the same questions until you have it straight in your head and you are satisfied with the answers. This is your body, it's a major op and is going to take a while to recover from. Ask exactly why the mirena is necessary, as you're having a hysterectomy anyway. Don't let the doctors intimidate you, they often have cold and condescending approaches.

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