Endometriosis UK
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Newbie and Panicking!

Hi all I'm new this the forum and endometriosis. I was diagnosed about a month ago via examination and MRI. Apparently I have quite severe endo and need to have surgery that could involve my bowel so am really stressing out. I have large endomitrionas on both ovaries and have been unable to conceive for over 18 months. I'm really lucky that i don't really get symptoms other than severe pain during my periods that last a day or 2 and not every period.

I've been reading all the posts I can on here and am really worried about the operation. Firstly alot of people seem to be in more pain/bowel issues after the op and seeing as I don't really have many now that worries me. Secondly I'm worried as they said I could need a colostomy bag. We discussed leaving the bowel endo and judy dealing with all the other bits at this stage... but is that sensible or will it spread more. A friend who had endo said by having surgery made hers grow back quicker and to leave it be ? Any thoughts and comments would be welcome. Should also mention I can't take any kind of hormone. Thanks for reading x

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Are you being seen at a bsge centre?

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Yes

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Hi I also don't take hormones for mine as I don't respond to them they just seem to aggravate my endo! I did what you are thinking off and had all my endo and endometriomas removed but left my bowel. I am under a bsge specialist and he said we will leave the bowel op until I need it as I don't get many symptoms from the bowel just upset tummy and shooting pains occasionally but I can deal with them. I know when there is an op to be done on your bowel it usually goes to a board to see if the symptoms out way any risks so it should be discussed in detail what is best for you. My pain else where has really improved since my last big op removing cysts and endo from bladder ovaries pelvis and womb and tubes. Xxx

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Thank you so much for replying. Can i ask how long ago you had your op ie how long it's kept it at bay. What was the op recovery like? I'm worried if i leave the bowel it will spread and be an even worst op at a later date? I'm just quite confused I think as this is all new to me as I didn't even know I had it! Thanks again it's so nice to get other people's experiences xx

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I had my last big op in jan, it's very overwhelming at first as there's not much info out there especially when it comes to the bowel side of it the fact you are under a bsge specialist is great they won't do anything they feel will put you more at risk or that you don't 100% need doing. Xx

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