Mirena Coil for endometriosis / adenomyosis... help please !

Hello,

I thought I would share my story of my diagnosis to receive any help/advice!

Around a year ago I went to the doctors to talk about contraception, after trying different pills which made me constantly bleed for months / years at a time. So the doctor suggested going on the Depo injection because i had explained the excruciating pain i had been experiencing. The doctor also said (and i quote) "oh it sounds like you have endometriosis, but have the injection and it will help and kill two birds with one stone!" - in which i was in shock to be honest because she left it at that and did not refer me to get an actual diagnosis...

I have been on the injection for around 1 year and a half and it was okay... it made me bleed for a couple of months at a time but the majority of the time it was okay. However, the pain was still there so i was back and forth from the doctors and then i finally got sent for an ultra sound / internal, which confirmed endometriosis / adenomyosis and then also got referred to the endometriosis specialist at hospital (Who was useless and basically suggested it was all in my head and it was IBS) ... and suggested having a Mirena Coil fitted.

So, I have now got the Mirena Coil fitted on this Monday just gone (16/05/16)...

I have never ever experienced pain like it !!!!! I wish I had researched prior to getting it done of how much pain i would have been in after getting it fitted! :(

After getting it fitted i felt so faint and the pain for the whole of the afternoon and evening was something like i had never felt before! I felt sick, could not stand and could not even sit still because the pain was just causing me to be uncomfortable. To the point in which i sat in the hot bath for most of the night till early hours in the morning. And Nurofen did not even take any of the pain away..

Yesterday, day 2, the pain had disappeared by about a half.. I still could not stand properly and the pain was roughly the same as really bad endometriosis / period pain...

Now, day 3, the pain is a tiny bit better but roughly the same, maybe "normal" period pain level.

Can someone please advise me...

how long this pain will go on for?

if getting the Mirena Coil was worth all of this pain? / does it help endometriosis / adenomyosis in the long run?

what are your own experiences with endometriosis / adenomyosis and the Mirena Coil?

And any advice or help regarding anything to do way endometriosis / adenomyosis!!

Thank you so much for reading my first and long post!!!

Sky, x

11 Replies

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  • I had my coil taken out after 6 weeks as the pain was excruciating. Pain went instantly when it was removed! It has worked for some women tho so might be worth persevering if you can xx

  • Thank you for your reply!

    I will try and leave it until my six week appointment and see how it goes ! Hopefully the pain might of settled by then !! Xx

  • Same here. My uterus became hugely swollen. Also found out that insertion had caused an infection to develop so that might have been the cause but either way, I couldn't take it anymore and had it removed. Within two days, the inflammation became to recede and I felt much better.

  • Hi Sky!

    I got mirena fitted just over a year ago and get excruciating pain every month for around 3 days, like contractions. Also period is lighter but lasts at leasts 10 days at a time. Overall I would say my symptoms are now much worse and I'm planning on getting mines removed next week during laparoscopy.

    They can be great for some and are a fantastic use of contraception, that's just my own personal experience.

    Best of luck and I hope your symptoms settle soon

    x

  • Oh no. That's not good :( I hope you feel better soon and I hope your laparoscopy goes well !

    I will try and leave it until my six week appointment and see how it goes ! Hopefully the pain might of settled by then !! But I'm not convinced it will as of yet and may be following your experience !

    Best of luck !!! X

  • Hi

    I had a mirena coil fitted in December for suspected adenomyosis for the first few days I had period like pains I was told I would need pain relief I had a pretty bad period within a week,then it settled down and the next 6 weeks were great,after this the pain was constant I was really unsure whether to stick with it as it does take six months before you feel the full effect but I felt I had to give it a real try with adenomyosis they recommend hysterectomy so I wanted to avoid that,I know it's hard when the pain is bad and there are so many negative posts about the mirena coil but it does work for some so hopefully it could work for you,for me it's not helped with the pain but I don't have any bleeding now so am going to leave it in place.I hope this has helped.

    All the best treez

  • Hi. Thank you for your reply !!

    I know I'm only on day 4 and I still feel so rubbish. Hopefully I'll stick with it and it will all turn out okay :)

    However I'm also a little worried that last night I tried to check my strings and could not find any sign of them at all. Maybe it was too soon or swollen? But I just thought I'd try because I keep hearing horror stories of people who loose them and can't find it again. Even through ultra sound !! :(

    Thank you again with your reply. I just hope the initial pain stops soon and isn't every day for 6 months ! As I wasn't told that it would be for that long :(

    It will all be worth it in the end hopefully !

    Sky :)

  • Hi

    It might be worth asking the nurse to check your coil as it's been fitted so recently just in case it's moved I was told it can happen after fitting and it would ease your worries (it's probably fine) and the pain will settle down soon.

    Good luck treez

  • Hi, My story is similar to yours. I haven't had a laparoscopy but they do believe I have endo and was told to try the coil first and see if that helps.

    I remember the pain being bad for about a week after but it should go away. Also straight after fitting I nearly passed out and felt ill! I felt like my legs were wobbly for days after. I got mine fitted o the 8th April and have stopped bleeding/losing dark old blood for all of 3 days in total :( i've had one period in that time and that was just the same as always but I don't think it works that quick unfortunately. My cramps come and go tbh but nothing like they were, its just the bleeding I have to contend with at the moment and how tired its making me.

    I found the best way to feel for your strings is to lie down, I waited a week before I felt for mine because you are tender and sore down there and everything seems swollen I thought. I think I'm gonna give mine 3 month even though I was told 6 month but I cant bleed for that long.

  • Hi there, I had the coil fitted after having my first bout of endo removed and for me it was the best thing I amber did. Having it put in was excruciating (I have a bicorunate uterus so had to have one in either side) but after about a week, the pain settled and I didn't have any pain or periods until it came out. I managed 18 months but unfortunately developed an infection and had to have it surgically removed. I know the coil gets mixed reviews and it is down to the individual person, but for me, it worked better than any of the other options. Hope it settles in for you and you get the same results as I did xxx

  • Hi, thank you for your reply. (sorry i took so long to reply!) That's a shame that you had to have it removed. Now after a month of having mine in it is still causing me to have bad period pains every single day :( argh. Hope it gets better soon!!

    Sending lots of hope that your pain isn't bad! :) x

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