Mirena Coil - what's normal?

[DNad1991]

Hi there, I'm 24 years old and have been having lots of problems for about two years with lower pelvic pain and heavy periods etc. It's suspected endo but my doctor suggested the merina coil to help tide over the symptoms and make my life a bit more manageable. It's affected my work life, love life and general health - I'm tired all the time and being in pain most of the time prevents me from leading an active life which is something I was used to. I decided to get the coil on Thursday 1st October and Not going to lie, it was excruciating! I didn't have anaesthetic and because I don't have kids apparently it's a little more painful - it was okay until they touched my cervix and then I felt like I was going to throw up and pass out. Anyway, I'm just looking to see if pain in the stomach, pelvis and back is normal? Like so painful to the point that I can't really walk and makes me want to scream in agony. I know it's only been a few days and I'm just looking for reassurance that this is part of the process and eventually it will die down. If the mirena doesn't work then I'll be looking at a laparoscopy. Does anyone have any advice or similar situations they'd like to share?

Thanks in advance,

Dawn

[shellx90]

Hi. I had a coil inserted at the beginning of last year and you're right having it inserted is very painful and I also nearly passed out. You will get stomach cramps for a few days after, I suffered for about 3-4 days but just regularly took paracetemol to ease the pain which seemed to help. I would allow at least a week for the stomach cramps to go and see how you feel afer that.

However I'm not going to lie with my Endo the only thing which helped me was an operation which I had July last year and it involved excising the Endo. My Endo was very deep and also affected my bowels so this is why I had this done.

I would still keep pushing to have a laparoscopy because if your Endo is bad unfortunately any hormonal treatment you have will only ease the symptoms for a little bit and then it will most probably come back.

What area are you based in?

I used to go to a support group which really helped as I got to talk to people in the same boat and also where I went a specialist nurse attended the group.

Shell

x

[GrittyReads]

You have the 'right' to have a mirena inserted under anaesthetic - unless they've changed things since I had mine done - they should have told you that. The passing out etc with the cervix being touched is typical, though - it's the way it reacts.

Despite the anaesthetic when I had mine fitted, it was painful for the first few days, but by (less than?) 6 months all was fine, and the last 5+ years were the best I've been since I was 15 (apart from when I was on the pill, which also worked for me - I think my endo was mild until my late 40s, early 50s).

However, I was in 50s when I had my mirena, because it all got so much worse when I couldn't take the pill any more. The idea was for the mirena to tide me over my menopause, which hopefully it has done, although we won't know until I've had it out for a while. It is possible that any latent endo can grow back if I've still got any oestrogen knocking around .

However, you are young, and need to be properly diagnosed. Read 'Lindle's' posts, on here, and find the links given to the various specialist endo (nhs) sites around the country. If the mirena works you may not need to do this, just yet, but endo may recur once the mirena comes out. Your GP can refer you to these centres. But check Lindle's posts as there is a host of information.

Hope this helps.

Gritty x

[DNad1991 in reply to GrittyReads]

Hi Gritty,

They told me that there was a chance the mirena wouldn't fit as I hadn't had children and if that was the case then I would be readmitted as a day patient and given an anaesthetic. The pain has definitely died down a lot, I'm finding it bearable as opposed to agony so that's a good step in the right direction!

Thanks for taking the time to reply, I will definitely have a look at Lindles posts and see what I can find.

Dawn

[DNad1991]

Hi Shell,

Thanks for replying! My pain has died down a lot since I had the procedure done, it's a lot more bearable now but my sleeping pattern is all over the place which I hope will readjust soon too. When I spoke to my gyno she was quite reluctant to do a laparoscopy but we agreed that if after 6 months I've seen no improvement that I would be referred for it. I've also had a lot of stomach problems, went through countless procedures at gastro and am on medication for acid reflux but they have since discharged me which is how I ended up getting referred to a gynaecologist.

I am based in Glasgow, I don't know if they have any support groups but I will definitely look into it. I find it so frustrating that nobody has a clear idea of what's wrong with me. I also know it can take years to get an endo diagnosis and I've only noticeably had these symptoms for just short of two years now.

Was there anything you did that you found helpful in terms of managing your endo before surgery?

Dawn

[shellx90 in reply to DNad1991]

Yeah they are a bit funny about doing Laparoscopys at a young age, I can see why but if you're suffering and it will help then I'm all for it!

I tried every hormonal treatment and it unfortunately didn't work for me but my Endo was very deep and in a lot of places.

The best thing that eased my bleeding was a tablet called 'Norethisterone' although this made my moods quite low. Buscopan is also very good to ease stomach cramps, if not I was a huge fan of hot water bottles and when I was at work I used to attach heat pads to my stomach.

Everyone is different and you're Gynae is right about waiting a bit to see if the coil works because if you don't need an operation then great but I would only wait about 3 months because Endo is not something you can live with for 6 months!

Hope this helps,

Shell

x

[Sam341]

Hi dawn,

Very normal to be in pain. The coil normally takes quite a few weeks to settle down, you have to be very patient with it.

It took nearly 6 months of painful bleeding before mine settled. And I was told it is very normal to take that long. The stomach cramps you have now should get better after a few days and then your cycle will probably be all over the place.

The coil is very good at stopping periods. Which in result should stop endo growing. Unfortunately it made No difference to Me. Endo still grows and I am still in constant pain. But it's worth a try.

If you try it then the Drs can't keep telling you it's the cure.

I'm also in Scotland and my experience has proved that fighting for proper treatment is very very hard. If you can, I would ask to be referred to Edinburgh to see a specialist who can give you a proper diagnoses and treatment. We aren't entitled to second opinions in Scotland so it's up to your GP. I'm not sure how your hospitals knowledge is about endo but here in Fife, it's shocking. Edinburgh and Aberdeen are the only place in Scotland for specialist treatment.

Good luck and I hope your pain free very soon.

Sam