Endometriosis UK
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Has anyone had endo come back with the mirena coil?

I had my first laproscopy 2 years ago and I'm now on the mirena coil and have been for 8 months but I'm still in extreme pain and have been ever since I had it put in. The doctor has advised me to stick with it as it helps stop it coming back but has anyone else been in this situation where their endo had come back whilst being on the coil or thought it might have and what they did about it? I have had the coil checked and have been told its fine and doing its job but something just doesn't feel right. I don't want to waste the doctors time trying to get another laproscopy when it might just be the coil causing the pain but they say you know you're own body and you know when something is wrong. Has anyone else felt like this and have any advice on what to do about it?

Thanks :)

11 Replies
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Im in the exact same boat as you! Had mine put in on the 5th October and still in pain. Now got to have mine out as its causing me to have rather large cyst grow! Good luck

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It's awful isn't it, they wouldn't take mine out they just told me to stick with it but it's just not working. I've heard a lot of bad stories about the coil and I thought it would help but Im definitely going to look at other options. Thanks and good luck! :)

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Hi i had the coil put in during a lap. Only my cyst was removed no adhesions and i feel my symptoms got worse on the coil.

The first surgery was done by a gen gynea so had no idea what advanced endo looked like. I have since had surgery at a bsge centre and they removed a few adhesions but it wasnt the aim of surgery. I will need radical surgery inc poss bowel as well.

Ask your gp to refer you to a bsge center :-)

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Thanks! I'll speak to them about it I wasn't aware that there was certain centres that deal with just endometriosis. My GP just made it seem like the coil was the answer to all my problems but it's just made things worse. I'll definitely look at being referred! :)

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Not a lot of people are! There is also a new set if nhs guidelines for dealing with endo. Take a copy of that with you, it will help with getting the gp to do their bit.

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Ive just found a bsge center and there is one in the hospital that I was sent to after my diagnosis but I got referred to normal gynae. Hopefully I can be referred to that now, i will do thankyou!

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They will always send to a normal gynea first. The key is for them to recognise that it is advanced and say we need to send you to a specialist. My gen gynea failed badly at this, and it was my research that got me to a bsge center

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I was on the coil for only a year and a bit and I had endo grow back while on it. Soon as it stopped my period I started forming new pains etc so I removed it, had a lap and they found extensive endo once again in my Pod.

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Thats where they found mine when I was diagnosed. Did they offer you any other type of treatment?

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I was told to go on Cerelle or the combined pill but I can't deal with hormones so I'm not on anything anymore.

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After 9 months of the Mirena Coil, I experienced positive effects. There was still pain though and requested seeing the consultant to remove it. A full year after it being put in I was told it was misplaced and in my cervix/embedded in my womb!!! I decided to have it replaced and work with it for a few more months. Within days of the first one being placed I wanted it out.

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