Misplaced Mirena: So. Here I am,... - Endometriosis UK

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Misplaced Mirena

beeebzy profile image
8 Replies

So. Here I am, 3 surgeries in for endometriosis/PCOS. Last surgery was in June 2016, where I had the Mirena coil inserted for the second time to try and see if it would help with pain associated with endo.

3 months later, I go in for a scan and post-op check just to see how the womb is looking, and just my luck, the coil is nowhere to be found in the womb...or surrounding area. Positive I hadn't seen it fall out (apparently they do that sometimes?) they sent me in for an x-ray, and of course, it's hanging out in the middle of my stomach.

A month later (November 1st), I go in for a laparascopy to remove the coil. Surgery lasted over 2 hours, and doctors fail to find the coil, and a further x-ray (while I was under) shows the coil has travelled further up and is nestled between my bowels and spine (L4/5). Post-op, the surgeon tells me we need to go in again in order to retrieve the coil and that it may be better to do a laparotomy in for easier access internally.

Has anyone ever had to have a laparotomy for a missing mirena coil? Or has anyone ever just left a migrated coil inside and just hoped for the best?

So, at the risk of having a third surgery, far more complex than any I've had before, can anyone who's had a similar experience give me any advice? I'm just rolling with life's punches right now, trying to catch a break, but failing...miserably!

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beeebzy
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8 Replies
Coreysart profile image
Coreysart

My God! That's unbelievable!! I am shocked that it travelled so much. I would think it would be very important to get it out before it causes even more problems. Good luck!

beeebzy profile image
beeebzy in reply toCoreysart

Yeah, the surgeon did say she was surprised it travelled around so much considering I've only had it in for a few months

Adhamilton profile image
Adhamilton

Dear of you you have been through it I was going to have a coil but maybe not now x

beeebzy profile image
beeebzy in reply toAdhamilton

I wouldn't not get the coil because of what you've read about me. I personally wouldn't get it again, but that's because I've had 2 instances now where it hasn't done a great deal for me.

But for others I've heard it's been a god send. So really it seems to be based on luck and how your body adjusts to it!

caroljane80 profile image
caroljane80

I would get a second opinion if I was you . You can get a private consultation with a BSGE centre or ask to be referred to a BSGE centre. It sounds a bit drastic to open you up like that asn they sound bloody incompetent !! I might be wrong but id have worries about doing anything further with the same people. All the best ( I'm having my own trauma as well )

beeebzy profile image
beeebzy in reply tocaroljane80

At the risk of having another failed laparoscopy, I'd rather get it over with and have it out completely. The consultant I'm under the care is apparently one of the best, not only in London, but country wide.

Hope you're dealing with your situation better than I am!

Milly2014 profile image
Milly2014

I'm supposed to be having the coil fitted in my next laparoscopy :/ before it went a-wandering did you find it helped with the pain?

beeebzy profile image
beeebzy in reply toMilly2014

Honestly, I didn't notice much of a difference. I've heard it works for some people amazingly, and others not so much. It really is just down to individual experiences I think.

Before it went wondering, I had a period that lasted almost 3 months, which apparently isn't completely absurd, and is the body adjusting to the hormones. But it's safe to say, I personally won't ever have the coil fitted in again.

Good luck with your surgery and recovery!

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