Bleed with Mirena coil after 3 years

[Milly2014]

Hi everyone, it’s been a while! I was put on the coil after my second surgery (lucky me I was asleep!) and had my third surgery a year after. Since then I’ve been pretty much pain and bleed free! ... til now. I’m almost at my 3 year mark with the coil (March) and did some research on forums and it seems this is almost like a trigger point for some others too? Has it happened to anyone else?

It was a pretty bad week, ALL the endo symptoms came back like a punch in the throat. Cramps, heavy bleed, mood swings, ridiculously exhausted. It’s actually taken a lot out of me and a while to recover.

Has anyone else had the same symptoms after being on the coil for a while? What did you do?

I’m currently travelling in Canada and to get it changed here is ($700!) luckily, I’m heading home end of feb and booking an appointment because not only am I worried, but if this is going to be how it is for the next two years then I want to get it changed ASAP. I’d like another because it’s been so beneficial... until now. I’m also immigrating to Canada and will be here for a while, so would like to give myself more time before changing it again.

Also, had anyone had it out in awake? What’s it like?!

Please only respond if you have answers relating to my post. I hope you’re all doing well.

Milly

[newstart2020]

Hi Milly

Wish I could remember where I read recently that 2-3 years is the max for the mirena being efficient at suppressing endo symptoms, but that's what my own experience with the mirena was for my first two coils, which I had put in under anesthetic by an endo specialist. I'm about to get my third one removed and replaced the same way, if the specialist doesn't see any additional complications.

The one I have in now was put in almost 4 years ago, without anesthetic, by a couple of enthusiastic non-specialist nurses after a smear test. They just offered to do it as I knew it needed changed, and I thought I'd just get it over with. If you have any doubts about the positioning of your womb, if it's tilted back or if you have internal sensitivity, painful smear tests etc., I'd recommend anesthetic and an endo specialist for insertion. I regretted not getting anesthetic the last time. (I broke my pelvis in two places 20 years ago, and the pain I experienced from that accident was less than the pain of getting that coil inserted.)

I'm getting another mirena put in this month despite the fact that the one that's in now has either migrated or was incorrectly inserted. The mirena was the only thing that ever gave me decent pain relief (I've had two endo surgeries, depovera and tried the pill) and I'm hoping that it was just an incorrent insertion the last time. I was recently diagnosed with adenomyosis as well, and the mirena isn't always a good idea when you have that apparently, as it makes the coil prone to migration. But still, I'm getting another one! I'm getting it put in by the endo consultant during a hysteroscopy so I've condidence that at least it'll be put in correctly. I'll give it 6 months to settle down and if pain and other symptoms don't abate, I'll opt for hysterectomy and keep my ovaries as I'm in peri-menopause.

I'm going to keep a better eye on this coil, and will get it regularly checked by ultrasound to make sure it's still in position. I'm cross enough at the symptoms I've been having for the past 4 years being ignored or not properly investigated to be very, very demanding this time round.

Good luck with your move and getting everything sorted!

[Milly2014 in reply to newstart2020]

Thank you so much for this! It’s made me feel much better!

Luckily my smears aren’t toooo bad, just leave me with a little cramping for the rest of the day, so fingers crossed the coil replacement won’t be too bad. But I will absolutely cry like a baby if it’s painful, probably more out of feeling exhausted and defeated than anything else!

I too, like you, am a Mirena fan. It’s been quite the ‘pleasant’ 3 years being relatively pain free and the last week or so has derisively knocked me for six. I’d almost forgotten what the cramps and extreme fatigue was like! I’m not too fond of the reminder!

Good luck with your surgeries!