Mirena or endo pain?

[LondonEndo325]

Hi all,

I had my laparoscopy in December 2020 to remove endo. During the op I had the mirena coil inserted. Now 14 months later, I’m still having pain most days. I finally have a gyno appt coming up in a few weeks and I think they’re going to suggest having my coil taken out, which feels like a really big decision.

Pre laparoscopy, I didn’t have pain every day just severe pain during periods and ovulation. Has anyone else experienced this, that although the pain isn’t as severe, it’s more frequent after a laparoscopy or coil insertion?

It’s 14 months, you think it’d settle down by now if it was the coil!!

I’m just unsure if I’d rather have potentially severe, debilitating periods for a week of the month or mild-medium pain every day? Unless they take the coil out and actually there isn’t as much pain during periods due to the removal of endo 14 months ago?

Thanks very much in advance!

[meg73]

Hello! I suppose it's a very personal decision and as you said you have to weigh up the options but I decided to take the coil out after having is for about the same amount of time as you. I definitely found that it was causing me more daily pain. After many GPs told me the coil wouldn't be causing pain and should be helping so I should keep it in, I saw a gynacologists who said in some cases, depending on inflammation in the woman, it can cause more daily discomfort. I had it out and I'm much happier. I now do have my excruciating period cramps back and still do have discomfort often but its not every day and for me that is a minor win!

[LondonEndo325 in reply to meg73]

Thanks so much for your response, that’s really interesting that you went through a similar thing. I actually previously had the Kyleena for 9 months but was in sooo much pain every day that I had it taken out and it was an instant relief.

I think I’m definitely leaning towards coil out, particularly as you had similar.

Thanks very much for your help and I hope you find relief from your pain x

[Endoff]

I had a similar experience with the Mirena coil and had it taken it out instead of replaced when it was due a replacement. Initially I felt better but dealt with agonising periods again once a month which was what I had been used to as far as I can remember. However, within a couple of years without Mirena, my Endo got much worse and had to have an oopherectomy to remove my right ovary, Fallopian tubes and Mirena inserted again, all by laparoscopy. My gyno specialist seemed to think that, had I replaced my Mirena when it was due, it would not have got so bad. Two and half years after my op, I’m again at the end of my teether, although this time with Mirena. I need to follow up via GP as I was released from gyno specialist after one aftercare check up and not due any more check ups with gyno in the foreseeable future. I’m in my late 40s so it may not be useful info to you but I just wanted to let you know. All the best.

[LondonEndo325 in reply to Endoff]

Hiya, Thanks so much for coming back and sharing your experience.

I’m so sorry that you’ve been through all of that, it’s so difficult to make the right decision on your own health, when we’re not experts!

This is the tricky decision, is it better to end every day pain in the short term or potentially prevent worse endo long term.

I hope you find a solution to all of your suffering and thanks again x