Mirena coil and dealing with treatment?

Hi everyone

I had a 3 month follow up consultation yesterday, following a lap I had at the end of May to remove large cysts and other bits of endo. It's been a horrible experience up to now, it's took an age to actually get referred (although this is not uncommon I know!) and recovery from the op has been very slow. I am still feeling extremely tired and suffering from PMS badly! Thankfully I am not getting much pain which is a great step forward. Another positive was the consultant who I saw yesterday, he was great and really listened and seemed to understand the emotional impact all of this has had as well as the physical. He has recommended that I have the mirena coil to deal with the endo and also to try to sort out my PMS. I think he was going to recommend going on the pill but I have had some really bad experiences on them so he didn't push that thankfully. I was just wondering what it's like having this coil and what other people's experiences have been? I'm hoping it's going to be a wonder cure... but that might be hoping for a bit much eh? :-)

He's also referred me for counselling which on reflection I think it's actually a good idea. It's been a really tough year so far and has taken it's toll. Anyway, I'm waffling now, it's just nice to have somewhere to be able to talk about these things!

Thanks in advance for any comments and advice xxx

7 Replies

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  • I went through 4 months of hell with the mirena and was torture wen i had it put in but everyone is different i hope it helps u tho x

  • I hate to reiterate what Emma has just said but i've had 2 mirena coils, both of which have had to be removed. The first one because I got a rare infection called actinomyces which can be quite dangerous apparently. The second I had put in at the GP's and nearly passed out through the pain of having it put in, it took her 3 attempts! That one stayed in for 3 weeks and I cramped until it came out. I've now been told that although I've had two children I have a very tight cervix and so my body doesn't tolerate them :( I have heard from ladies on another forum that the mirena works really well for them so I guess it's just a case of try it and see. Good luck, I really hope it works for you xx

  • Hi

    I had the merina fitted in July under general anesthetic. I have had no trouble with it at all. Well I say that but I have been having trouble with bleeding, 4 days bleeding and then 2 not and the more bleeding and so on. I spoke to my consultant and it is just it all settling down. They have put me back on norothiterone 5mg twice daily to help settle it down. I've been on these now for 2 weeks and fingers crossed it seems to be working. I am not getting much pain either which is a massive bonus.

    I hope your reduced pain continues. i personally would say try the merina it may or may not help. If you decide to go for the merina or not I wish you the best.

    xx

  • I've been doing well so far with my Merina coil. Like you, I had cysts and also have stage 4 endo. I have never had children, but my consultant wholeheartedly recommended it. I had my coil inserted during my first lap in June under general anaesthetic. I did get some cramping, but was in pain from the surgery anyway so it's hard to distinguish what was due to what! Diclofenac Sodium 50mg and Buscopan 10mg (great for stopping muscle spasms) together with paracetamol were enough to help me deal with the pain post-op / merina insertion. I did have quite a lot of spotting for the first 2 months, but this seems to have settled down now. I'm also on Prostap injections, so whilst this should completely stop periods, I have still had light spotting once a month.

    I would say go for it - don't be surprised to have crampy pain for the first few days or a bit of spotting. I don't have stacks of pain at all anymore and it's so much easier than having to remember to take pills!

    As for the emotional side, I've found it really helpful to talk to friends, and they've been brilliant. I had my second lap 10 days ago to separate my uterus and bowels, so am off work recovering from that right now. As this horrible disease affects 1 in 10 of us, with huge numbers un-diagnosed for ages, I've also made a point of talking to my male friends about my experience. If one positive thing can come of the difficult time I've had this year, it would be more awareness. Men will have girlfriends / wives who may also suffer and are also often in decision-making positions, yet most I have talked to have no idea what endo is and how it affects our lives.

    Good luck - hope you feel loads better both physically and emotionally :-)

  • I hope you are feeling better emotionally and physically better today.

    I have heard lots of horror stories about the coil but I have also heard a lot of good stories about the coil.

    Speak to your consultant to see what they suggest.

    If you ever want to chat message me.

    Kind Regards

    Emma-Jane

  • Thanks so much for all of your replies, I really do appreciate it. I guess everyone is different and reacts in different ways to all the kinds of treatment on offer. I am definitely going to give it a go, if it works and makes me feel better then that's great and if it doesn't then we'll have to try something else (although I hope that won't be the case!). I'm just waiting for further blood test results and an appointment at my docs now so that we can sort this out... there does seem to be a lot of waiting involved doesn't there!

    Regarding the emotional side of things, my boyfriend and friends have been brilliant, but I do think it's hard for them to completely understand what it's all like. I think I just need to keep talking to them about it and hopefully it will help get me back on track and help them understand what's going on.

    Thanks again ladies, I really appreciate all of your replies and wish you all the best. This is an amazing site and it's certainly helping me deal with all of this.

  • Hi, I'm due to have the mirena fitted on March 19th. Just wanted to ask a quick question- have noted that some of you ladies were given a general ? I've not been offered anything like that at all. There's no mention of even a local in the leaflet the hospital have given me. I recently had a cervical biopsy with no pain relief- which was pretty grim. Can I expect the mirena to be more painful ? Thanks.

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