Can anyone advise me on Mirena coil for endometriosis treatment???

Hi guys,

Can anyone out there give me any advice on the Mirena coil?

I had surgery in April this year to remove pelvic endometriosis and a subserosal fibroid ( after taking 10 years to diagnose) and already I am starting to get quite severe pain again!!

My Gp prescribed me microgynon 30 a couple of weeks ago but I have now had to stop taking it due to various side effects and making me weep at the drop of a hat!!!

He also suggested the Mirena coil to me but I am feeling quite reluctant to have this fitted as I have heard so many negative comments around it.

Could anyone give me any advice on it ?

Or has anyone out there had a positive experience with it ?

At the moment I feel like I am never going to get rid of this pain and it is really getting me down!! :-( xx

13 Replies

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  • Use the search box at the top of the page and type in 'Mirena'. We have discussions on Mirena nearly every day, there are hundreds of posts about it. Probably a dozen or more posts in the past week alone. Most ladies with endo do find it very very VERY good, but it doesn't suit everyone. It is absolutely worth trying though.

    I am a huge fan, for so many reasons.

  • Hi,

    Thanks for reply. I'm new to this but will take a look :-)

    It's nice just to be able to chat to other people going through the same thing.

    Take care... Nat x

  • Hello Nat18

    I had my first mirena put in during a Laparoscopy. During some heavy bleeding, two months later, the mirena fell out! (Quite unusual I was told by my consultant!)

    I had my second mirena put in while I was awake. This was painful but bearable. I had a lot of constant bleeding for the first 12 weeks and then my periods became incredibly light (which was great) unfortunately the mirena didn't help my pain at all.

    The worrying side effect that I had, happened about six months after having the mirena put in. I started to feel really depressed (lots of tears) and began to have severe anxiety. I needed to go on anti depressants and to have some professional help to deal with the anxiety. I didn't realise that my depression/anxiety was linked to my cycle, but when i kept a mood diary, i discovered there was a definite link to my symptoms.

    After 15 months I decided to speak to my doctor. She said that there has been reports of the mirena causing psychological side effects but she didn't know if mine was caused by it. I decided to have the mirena taken out and my mood improved straight away.

    I still do not know if the mirena was the cause of my depression/anxiety, but I definitely improved after it was removed. I think that we owe it to ourselves to try all treatments, but also to be aware of any and all possible side effects.

    Best wishes,

    Barbara. X

  • Hi Barbara

    Thanks for the advice:-)

    I am new to all this but it's nice to be able to talk to others going through the same thing!!

    I am feeling quite down in the dumps at the moment maybe due to pill or just being in constant pain.

    Gp was going to put me on anti depressants but didn't really want to go down that root!!

    Maybe the mirena coil wouldn't be the best option for me at the moment?? Looks like I will have to see if there are any other options available when I go back to see gp this week.

    Thanks again.. Take care

    Nat x

  • Hi Barbara, I can absolutely relate to your experience. I had mirena put in during my lap for stage 4 endometriosis about 18 months ago. The first 9 months were awful with side effects but I tolerated it because I was worried that removal would increase the risk that my endo would come back which would result in another op.

    In the last 12 months I have become increasingly depressed and have scary anxiety. I have lost all enjoyment in life and have become a hermit who doesn't want to go out or do anything. It is ruining my life and making my work life very difficult.

    I truly believe this is caused by the mirena.

    I note that you have removed your mirena.

    Did you have Mirena for endo? If so, what has your experience been with your endo since removal?

    Do you think the mirena was actually making a difference in preventing it from returning?

    I would love to take this out but at the same time I don't want to go back to heavy painful periods and risk the endo returning.

    I am going to see a psychologist and am considering medication to treat depression as a way of dealing with this without removing the mirena.

    Thank you for sharing your story xx

  • Hi Nat18. I'm in a very similar situation to you. I have a copper coil at the moment but its solely for birth control purposes. I'm going to have it removed but I'm not 100% on the mirena.

    I've put on a bit of weight with Gnrh injections so this is a big concern for me as I understand this is also a side effect with the mirena. I have my 2nd laparoscopy in a few weeks so I'll decide by then.

    Please let me know what you decide and how you get on. I'll do likewise.x

  • Hi Lynne b,

    Thanks for the reply:-)

    It feels like you can't win sometimes doesn't it?

    I have heard so many negative comments about the mirena coil that I just don't know what to do next.

    I have just had to stop taking the pill after 2 weeks due to severe headaches and pelvic pain, so it looks like I will have to go back to gp next week and see what other options there are available.

    Good luck with your laparoscopy and let us know how you go on ?

    I will do the same:-)

    Take care.

    Nat 18 x

  • Hi nat,

    I've had my coil in for 6 months after advise from my consultant. The first 2 months it helped slightly, although since then my pain has been worse than ever, and I bleed for 12 days. I recently went back to my consultant and was told to give it another 3 months, and they will take t out if no improvements. Mine also had dislodged slightly, but that may be down to the fact my womb is incredibly tiny, and the coil takes up the whole space. It's worth a try, if it doesn't work you an have it removed.

    Charlotte

  • You think yours is in a tight spot, mine was implanted (during surgery) in one side of a bicornuate uterus !!

    en.wikipedia.org/wiki/Bicor...

    I don't really have a womb, just two extended Fallopian tubes which get fatter at the bottom.

  • Hi Charlotte,

    Thank you for the reply:-)

    I'm sorry to hear you have had a hard time with it.

    It sounds like many women have the same sort of problems!!

    I will be heading back to my gp next week to see what options are available,as the pill just didn't seem to agree with me!!

    I didn't think I would be getting this much pain already after having surgery only in April this year.

    Maybe I will give it a go as I need to try something to ease the pain.

    I will let you know what I decide !!

    Let me know how you go on as well as it is nice to talk to someone who understands what you're going through!!!

    Take care

    Nat 18 x

  • Hi everyone.I have been reading your comments about the merina coil.I am due to have one fitted when I have my laproscopy soon but Im unsure about it to be honest.Its so hard because it seems you either have to put up with the pain or the problems with the coil?!? I too get very down with being in so much pain and I was admitted to hospital because it was so severe.I feel alot of guilt as some days I just dont want to do anything and I have a 2yr old that deserves a mum who does more with her.x

  • I have had it fitted and have only had a positive experience. I am still to have a laproscopy but they are pretty sure it is endometriosis (I have had all bowel checks done, ademyosis showed up on a scan and I have previously been treated with microgy.back to back to treat it). I am perhaps fortunate as I never have had side effects with the pill so maybe my body reacts well. Having it fitted was no the most pleasant, but i managed it under local anaesthetic though I understand you can have general. I had horrible cramping on the day and a bit of spotting the week after but nothing since. I however have always had scant periods with horrendous pain so if you have very heavy ones then who knows. Psychologically I found it quite hard and I could feel something when I ran which I think was the threads settling into place. Aside from these, no other effects. I was super paranoid about getting fat or spotty (babyish I know) but it actually has much less hormone contained in it than the pill so is less likely to have any effects. It has definitely improved things though at the moment I am going through a bad patch-but it's a better bad patch if you see what I mean. I also have spoken to other ppl about it prior to me having it fitted and they were all super positive. Good luck whatever your decision.

  • Hi :)

    I've got to say, I absolutely love the mirena! It took my awfully heavy, ten days - 3 month periods away. The first couple of months are so rough though, when you first have it put it. The cramps are awful because your body tries to reject it - but honestly, after that it has been amazing. I'm due to have mine changed after 4 years because it wears out more quickly when you have endo. During the prime years of the coil I had no periods, and my skin, mood and general happiness increased so much. Couldn't give it more of a thumbs up if I tried. Absolute godsend! But, it's different for everyone... It's a scary change, but if it works for you, I guarantee you won't look back.

    Hope this helps!

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