Nervous : I know I've posted on here a bit... - Endometriosis UK

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Nervous

Abi_97 profile image
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I know I've posted on here a bit and I know I shouldnt worry but did anyone got told their stage at diagnostic op? because they told me I had extensive nodules (I think thats the term) but not where or how bad 😮 Do they use the term extensive for everyone? I wouldnt worry but extensive is such a scary sounding word 😂 if it was bad would they of operated on me straight away 😮

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Abi_97 profile image
Abi_97
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Starry profile image
Starry

Hugs x

I wasnt ever given a stage. It's an American system not systematically in use here. I was simply told I had severe endo after my op. I worked out that equates to stage 4 by Googling.

If you're worried then ask for a copy of the operation notes to be sent in the post before the post op follow up with your gynae, it can help you think which questions you want to ask.

Whether they treat at the same time depends upon the location and severity. More complex treatment takes planning, extra consent, extra scans and may need additional surgeons present eg colorectal. I had naively expected to be treated all in one go. I did get a small ovarian cyst treated in my diagnostic but the RV endo nodule I had was only excised 7 months later as it involved the bowel.

Abi_97 profile image
Abi_97 in reply to Starry

Thanks x

Ahh I didnt realise it was an American thing 😮 I do have my discharge summary but looking at it makes me just question more 😂 Ahh I'm a bit naive and oblivious I thought it would be over in one op just need more op after a few years 😭 Thank you for explaining it a bit better than they do at hospital 😮

Starry profile image
Starry in reply to Abi_97

I thought exactly the same originally and was disappointed when I realised my nodule was still there after. 🙂.

Your op notes is different to and will have more info than the discharge sheet.

Abi_97 profile image
Abi_97 in reply to Starry

Aww 😭 From looking at my notes even though they dont have much info on I'm either stage 2 or 4 😮

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