Mirena Coil-extreme pain: Hello all, Hope... - Endometriosis UK

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Mirena Coil-extreme pain

LaurenRLI profile image
19 Replies

Hello all,

Hope you are all ok.

Just wondered if anyone else suffers with the mirena coil? I had mine inserted a month ago during my lap and I am still getting excruciating cramps to the point where they take my breath away.

I never wanted the coil but the doctors were insistent that it would help, however they never told me there would be any pain.

Anyone else suffered with this? How long does it take to go away? 😔

Lauren xxx

19 Replies
Elmo1986 profile image

Hi Lauren, I'm sorry to hear you are suffering 🙁 I had the mirena coil and it caused me nothing but problems. I had it put in about 8 years ago before my endo diagnosis. After my five years were up, I couldn't wait to have it removed as I was convinced it was what was causing my unbearable pain.

It was only after I had it removed and the pain continued that I got it checked out. Although I can't be sure if the coil was making the pain worse or not, I do know that it certainly didn't make it better.

My consultant is constantly trying to push me into having one put back in but I have refused as I know it doesn't stop my periods or help with the pain. I had an awful time with it.

Have you had children? I know I've read a lot that the coil is much better if you've had kids (I haven't).

I really do hope that, for you, it's just settling in and will help with your pain, but if it doesn't improve, get it removed. I so wish I'd have had mine out sooner than I did. I've been on Prostap injections and they are amazing. I have just finished the course so will undoubtedly have to go back to battling the hospital to not put another coil in me!

I hope you start to feel better soon.

Andie xx

LaurenRLI profile image
LaurenRLI in reply to Elmo1986

Hi Andie,

Thanks so much for your reply, I'm sorry you had such a bad time with it!! I phoned the hospital today because it's just crippling me and they said it shouldn't be causing this much pain and to come and get it removed? But I don't know whether I'm giving up too early and whether it takes longer than 4 weeks to settle? I don't actually know why I've got the coil-does or help endo from coming back?

Hope you don't have to have another one put in and that you are ok xxx

Elmo1986 profile image
Elmo1986 in reply to LaurenRLI

I imagine it's worth getting it checked to make sure it hasn't moved etc, even if you don't want to have it out just now. You could give it a little longer to see if it settles? It's very easy to remove, you can get it done anytime.

They give you the coil cos for a lot of people it stops their periods, or makes them lighter. And with endo being ruled by your cycle, any attempt to stop it makes sense. But different things work for different people. Like I said, it didn't work for me but I have a friend who swears by it.

I would definitely nip into the hospital just so they can check the position of the coil if nothing else. Sometimes they can also be too large for your cervix, it's worth asking them to check that as they do do a small version of the mirena too xx

me me me!! I had mine put in Feb 14th this year - sucks I know! The pain that day was excruciating as I had it put in normally - not with any pain relief or under anesthetic. I ended up in A&E that night crying in pain, and since I've been on codeine, Tramadol, suppositories you name it I will try it just to ease my daily pain. I have to admit the mirena has helped with the bleeding but thats it... its made my pain 10x worse. I am having it taken out when I finally get my diagnostic op in a few months but I don't know what the next step is because I have tried multiple pills, implant, injections and now this coil and everything always ends the same. Trust me you are not alone!!

I can't advise on if the pain goes away and although mine isn't as bad as the first day I am still in pain every day.. without fail - and the bloating is horrendous, I use to have some control over it but not any more. as I've had mine for 6 months now with no improvement I know its not going well... but hold in for the 3 month mark and see what happens. I had to wait because they said if within 3-6 months it was still bad I could have the op and so I hung in very tightly - ruined my last few months of 1st year at uni and made exams 10x harder but I did what I had to :/

LaurenRLI profile image
LaurenRLI in reply to

Oh no you poor thing!! I'm so sorry you're having such a tough time! I spoke to the hospital earlier today and they said I could have it removed tomorrow but don't know if four weeks is enough time to judge it and whether I should stick it out a bit longer.

The pain is worse than my endo was!! Xx

in reply to LaurenRLI

I'd say it depends on what you are doing with your life, if you can survive with the pain then maybe try it. As I am a student I kind of just dealt with it as much as I could but I recently got a job to cover summer and its been hell dealing with the ups and downs and if I could get the coil out now I would but I can't because the damn strings are unreachable - I'm not having them trying to 'scoop and scrape' it out ;-; but I hate having to take painkillers just to get through the day and nothing has improved since the 2 week mark... so from my experience I would say it might have peaked and be the best it will be for you. It sucks but I guess some of us just don't get along with it... whereas some people say its a god send haha. And yes!!! my pain is so much worse than my suspected endo ever was!!! xx

LaurenRLI profile image
LaurenRLI in reply to

Yeah that's mt main worry, I don't know how I am going to cope at work! I've kept note and the cramps are at their worst roughly 1-5ish and I usually get a hot water bottle and get to bed! But I can't do that at work obviously. Maybe I could hang on until my check up in a few weeks xxx

in reply to LaurenRLI

Yeah if you feel you can hang on it may be worth it and hopefully you'll start seeing the benefits soon!! And yeah I end up in bed pretty much all day my shift is first thing in the morning but I've only worked there 5 weeks and already called in sick 3 times! I feel terrible because they are understaffed but I can't help it and they seem to understand. Only 3 weeks left and then the contract ends and I'm back to uni where they completely understand and help me out. I really hope you start seeing the benefits of it.. from what I've heard it's a miracle worker for a lot of people just unfortunately not me xD haha xx

GP12345 profile image

I had it fitted 4 days ago and I am still in excruciating pain with cramps and my stomach is swollen like a balloon. I can barley make it out of bed. Just wondering if gour pain has subsided or if you've gone down the road of having it removed?x

LaurenRLI profile image
LaurenRLI in reply to GP12345

My crippling pain lasted 6 weeks, only the last two days have been more bearable. I was completely bed bound for weeks but I'm starting to feel a bit better now. If ou are anything like me then prepare for weeks of feeling like that. But I hope you feel better soon xxx

GP12345 profile image
GP12345 in reply to LaurenRLI

I'm glad your feeling better! i didn't realise how sever the cramps were going to be and seriously don't know how much longer I can handle it for... it was very painful having it fitted too. I guess I'll just have to wait it out xxx

LaurenRLI profile image
LaurenRLI in reply to GP12345

I felt the exact same, every single day I said right that's it, I'm getting it taken out and then a little voice told me to wait a bit longer. No one tells you of this pain, if I'd have known I would never have had it put in. I'm sorry you are going through it too xxx

Tj1995 profile image

I know exactly how you feel. Right now,I'm currently in bed with a hot water bottle as I can't take the pain anymore. I had it fitted 4 weeks ago, I had no pain what so ever 2 weeks ago, I thought I had a pretty easy and out of no where I was crippled in pain, I'm going to be asking my GP to take it out, as my body must not be taking to it. I hope you are able to stick with it longer than me! Good luck!

LaurenRLI profile image
LaurenRLI in reply to Tj1995

It’s awful isn’t it. I am now on my 15th week(!) and still sitting on work with two hot water bottles and having to escape to the toilets for a cry.

I don’t know what to do anymore, if I get it taken out the endo might come back again as it was before!

Feeling really desperate now. Hope you are ok xx

LolaLo3 profile image

Hi I was exactly the same the pain is horrific ! I was in and out of hospital they kept telling me it another infection that why I was getting the pain, I asked for the coil to be removed but they prefer to keep it on for more than 12 weeks... I lasted 4 weeks till I got admitted and they found out by looking at my previous scan that the coil gave me 3 hemorargic cysts on my right ovary my ovary were completely fine when I got my first scan a few day’s after I got the coil fitted and then i got a scan that showed the cuts 4 weeks later... I honestly don’t agree with the cool I know everyone is diff and it’s great for some people but honestly if your in this much pain I would asked to get it removed before any other problems start... I just wish I got it removed I’ve now been in pain every day since I got the coil fitted , even tho the coil is out I’m still suffering every day with the cyst’s and endo and constant infection’s.. x

LaurenRLI profile image
LaurenRLI in reply to LolaLo3

I don’t agree with the coil either-I never wanted it and yet was told I had to as it wasn’t the only option. I’m on week 15 of crippling pain and I honestly don’t know what to do anymore, but it’s really affecting me.

I’m worried that If I get it removed it will mean the endo returns xx

LolaLo3 profile image
LolaLo3 in reply to LaurenRLI

I would ask to get a scan to check coil in place ok , and if there’s any cysts grown , mines grew 3 cyts in 4 weeks that’s why my pain was soo bad, I have my appointment tomorrow for a scan and internal scan to check my cyts.. but anyways defo ask your doctor to get an appointment for you .. u cant be in this pain and esp all this time .. x

Zobags profile image

Ive been in pain everyday since may, i had the coil fitted about 3 nearly 4 months ago now and still in pain, bloating like im five months pregnant and have none stopped bled for two weeks but get alot of brown (old blood). I want it out!!!

LaurenRLI profile image
LaurenRLI in reply to Zobags

I struggled desperately every day for 4 and a half months and demanded to get it taken out two weeks ago. They told me that it doesn’t help to prevent it coming back-so why do they give it to us? I told them I didn’t want it in the first place; so angry. Literally ruined my life for those months and I got engaged during that time. Never been so miserable!

Life has been amazing since I got it taken out-not one pain, it’s as if it never happened!

Get it out!!

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