Has anyone had the mirena coil and still ... - Endometriosis UK

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Has anyone had the mirena coil and still experiencing endo pain?

AnnabelM
AnnabelM

Hi Ladies,

I'm searching to see if there are any other ladies out there that is going through a similar situation I am going through.

I was diagnosed with endometriosis in 2014. I always had endo pain which was bearable with pain relief at first but got worse so I had an laparoscopy in 2015. Last year July I was fitted with a Mirena Coil as my pain was getting worse and was instructed by my gynaecologist to take 2 cerezettes a day for 3 months and decrease to 1 for another 3 months and then stop it completely. I followed the instructions and finally came off the cerezette, for a whole month everyday I had period pain, the following month I had a serious endo flair up and started bleeding. The pain was so bad I was hospitalised so that they could manage the pain. I had 2 more flair ups over the next couple of months, I was referred to my gynaecologist. Once I had my gynae appointment they felt it wasn't the coil and was unsure why I was having these flair ups. They agreed for me to go back onto the cerezette, to have a MRI scan and another laparoscopy which won't be until next year because of it's long waiting list. So I've been on cerezette for 3 months now and still have the mirena coil but still experiencing pain and having a period every month. I wanted to know if anyone else is having the same or similar problem and whether anyone has any advice?.....I'm trying not to stress but I can't help but wonder what is happening as my gynae was confident that I wouldn't be going through all this pain.

7 Replies
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Hi, I can’t really help on this topic other than to say that I was exactly the same! I overlapped cerazette and the Mirena gradually to be just on the Mirena for a year. I’ve just had my first laparoscopy and they excised endometriosis and a cyst.

It could be anything from a cyst to further growth, so worth a second opinion xx

AnnabelM
AnnabelM
in reply to Harley9

Thank you for sharing Harley9 I'm definitely going to try and get a second opinion it will be interesting to know whether I have a cyst too. Thanks again for responding to my post x

Harley9
Harley9
in reply to AnnabelM

Best of luck 💛x

I have had the mirena coil for 20 years (on my fifth one), still have endo symptoms including period pain, back pain, urinary problems and endo is still actively growing.

AnnabelM
AnnabelM
in reply to Poppy1973

Thanks for sharing Poppy1973, I'm experiencing all that you have mentioned aswell. I really thought that with the mirena coil I wouldn't still experience this, but I suppose it doesn't work like that for everyone.

Hi, I had the coil which helped with bleeding, not pain, then I had excisions through laparoscopy and still in pain. I’m on my second month of prostap and I feel like a new woman, not as tired (and I did used to get exhausted) barely any pain-life changing. Xxx

Hi Emmaquinny,

Thank you for responding to my post, My endo nurse did suggest the prostrap injection to me but wants me to have a laparoscopy and the scan first before to see what comes back. I'm going to do some research into it and maybe it's something I can discuss with her in my next appointment. That's amazing that you have no more problems I will definitely look into it. I desperately need something to work I'm tired of the pain and bleeding. Thanks again for your message I feel there is still hope for me xx

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