Adenomyosis and the Mirena coil - adv... - Adenomyosis Advic...

Adenomyosis Advice Association

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Adenomyosis and the Mirena coil - advice please!!!

jessica17
jessica17

Hi everyone,

Two days ago I had a transvaginal ultrasound and then had the Mirena coil fitted to try to manage my debilitating period pain and other symptoms. The doctor did another transvaginal ultrasound to check it was fitted successfully and said it was fitted properly and in the right place.

She then said "looks like Adenomyosis. I can see the pockets in the uterus wall". After waiting for several years for an indication of what's wrong with me, and being told "some people just have bad pain with their periods, get on with it", I couldn't believe it and was relieved yet scared.

I previously had a laparoscopy in summer 2017 to look for endometriosis and this was not found so for a year and a half I was told my uterus was healthy when I knew it must not be.

So I had the coil fitted 2 days ago. My advice I'm seeking is about what I can do to manage the cramps that I'm experiencing since it was put in? I've got a hot water bottle which helps but I can't stand up straight!

I have missed 3 days of work now so I also want to ask how long it took you to stop having the initial severe cramps due to the Mirena insertion?

Any advice will be appreciated.

Thank you,

Jess

5 Replies
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Hi I had the coil for the same reason, it was unbearable pain with the coil so I know what your going through, very strong painkillers only took the edge off the pain but had to get it taken out after a month, I now have the adenomyosis pain everyday all day which was still better than the coil, I hope yours goes off soon, been on painkillers for the last 3 years now, I was offered ESMYA after the coil but read up on it for adenomyosis, I've refused this back to the drawing board, I hope your sorted soon. Tammy.

Thank you for replying, Tammy! Since writing this I've actually had to have the Mirena coil removed, because as you said as well, it felt like it was causing even worse pain.

I use painkillers to try to manage adeno pain but many of them do not work for me.

What is ESMYA? I've not heard of that.

All the best, I hope you stay as well as you can do!

Jess.

Hi jess, ESMYA is used for fibroids but the first time I'd heard of it was in Jan at the gynecologist appointment, you have to have a monthly liver check it's supposed to shrink it but when I googled esmya for adenomyosis it came up with clinical trials so it's new for adeno and I was supposed to have it for 12 weeks have a break then another 12 weeks, I didn't like what I read really plus it comes back, so I'm off back to see gyne I'm trying to push for a hysterectomy as I have two teenage children and no longer want more, I think that's my only next option but I think the gynecologist is reluctant as I've not been offered one as yet, not alot of painkillers work on mine either just takes the edge off the pain, only thing is I can't drive with the painkillers they make me drowsy so I don't have much of a life as yet but fingers crossed I get what I want when I go on the 18th Feb I hope you get sorted out soon and your pain is not every day.

Hi again Tammy,

Thank you for your reply. I see, I hadn't heard of that before, but I share your concerns: I wouldn't want to damage my liver in the process!

It sounds as though your best bet may be a hysterectomy if you're ready for it, as you say you already have children. Good luck if they do go ahead with it!

Thank you; I really hope things get sorted for you soon!

Thanks Jess same for you hope your sorted soon. Tammy.

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