Mirena Worries

It's now less than 2 weeks until I get my Mirena inserted, and I'm dreading it. The talk from my doctor has only made it worse! The last internal exam I had was a nightmare, so painful, and I'm worried that this will be just as bad if not worse. I made the mistake of looking online, and the horror stories I've read are enough to put me off. However, the pill has not worked for me and the last laparoscopy didn't remove the pain, so it is worth a try.

I'm also really sad and confused about the whole not having children thing. Despite knowing I'm getting it for endo and not contraception the gp talked about me having to be really sure I don't want to have a family before she puts it in, because she's not planning to take it out anytime soon. I'm 37, I know that I've left it too late now and that I've never been that bothered about having kids, but it feels so final to admit that out loud and say that it's never going to happen. I hope that makes sense to someone, 'cause I'm not sure that it does to me. At the end of the day, there is no way that I'm going to go back to how I was before, and for that I need to keep taking hormones. Therefore no babies. But I can at least hold down a job, and I've been able to return to some of my hobbies again (when the pain allows).

Thanks for listening. My partner does his best, but he really doesn't fully get it, and I don't want to talk to my mum because I know she's hoping for grandchildren and I can't bear her disappointment,

17 Replies

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  • Hi there just to let you know that im one who didnt have a horror story with the Mirena Coil. For me personally it has been brilliant. I had it inserted mid cycle and it wasnt painful. Take some pain relief before hand,giving it time to get into your system. I did bleed for a few months after having it fitted but only slightly which required a panty liner. Once this settled i didnt have a period and i didnt have the dreaded monthly disabilitating pain. Good luck with it and i really hope it works for you. Be patient and give it time. Unfortunately it doesnt cure the endo and i have had two ops since having mine in . Fortunately the Gynea left it insitu both time. Im now almost 4yrs with it and it has probably saved me from alot of excrushiating pain. All the best. x

  • Hey dont be worried it isnt too bad. I was very tense when i had it fitted a few years ago but they are very good with you during it. I did feel the jag i got into my cervix but it helps with the rest of the insertion. I was unlucky as it fell into my cervix a couple of weeks after but thats probably either wasnt inserted right or just slid down. I chose to have it removed though as wasnt sure about it all at that stage. Good luck and yes take painkillers before as it helps u relax. From the comment above hello but just read about what u said about the coil not helping with endo? I have read this a few times from others and now a bit worried as after my temp menopause i have to have the coil fitted also, but is there any point if it doesnt help? xx

  • Hello there, it certainly helped relieve the horrid pain because my periods stopped. Unfortunately the endo has kept on having its unwelcome party as my recent operation has confirmed. I still would reccommend having the coil and i believe as i said above it has probably saved me from alot of pain over the years. On the negative side if there is to be one in my case, it has probably also disguised symptoms which might have made me act sooner. All the best :)

  • Thanks for that. i will defo get it fitted as cant go on the pill due to migraines so kind of need to. Im sure it will help alot but just a bit worried about the future xx

  • Not sure what horror stories you have read but yes it is a bit uncomfortable getting it fitted. I laugh now but my surgeon did it and the nurse mid way had to remind him that I was awake! But in all seriousness it was 5 mins of not that nice, and I did without pain meds so with I am sure it is no worse than endo cramps, which last longer. After I cried a bit - it was like that feeling you get after a smear - bit emotional. I had no idea why I was crying but it was a tad embarrassing as I was in the hospital car park... So if you can take someone who can hold a big bar of chocolate for you and give you a hug after... all the better!

    Not sure what your circumstances are re pregnancy but having this inserted is only really signing up for 3 months - it can be taken out at any time and your body will take about 2-3 months to adjust.

    For me it did not take away the pain and in the endo came back - I take the pill continuously for pain. But it might have stopped it a bit, who knows and it did sort my periods, as in stopped them.

    Good luck hun. x

  • It sounds like you're grieving that you may not be able to have children and it's hard for you to offload this feeling of disappointment to those most nearest and dearest which I can understand. I wondered if you should speak to someone about this who can help eg endo helpline or counsellor through self referral at GP. Remember there are always alternatives to consider. As for the mirena it provided me with relief for about a year before I had my op to remove endo and an ovary. I hope your future feels brighter very soon. It will. Keep talking about the physical and emotional aspects of endo, where possible!

  • Yes I can identify with all you said!

    I had the more a fitted a year ago. In all honesty it wasn't pleasant, but it doesn't take long and hopefully the staff will be good with you. I ent back to work after having it fitted and soon forgot about it. Do take painkillers before it though.

    It took mine about six months to settle and there were a few times I nearly gave in. But it's quite expensive (£95) hence why your GP says they're not planning on removing it quickly!! Now it's settled it's fine.

    Unfortunately it didn't solve my other pains but at least no real periods. I still ovulate. No migraines which like you we're why I came off the pill.

    The babies thing. Yes I know what you mean, I felt the same way, no intention of having children and I'm 39, but closing the door with the coil insertion, stirred all those questions back up again.

    I'm now resisting hysterectomy partly because I can't face making that decision irreversible. Yet I truly have no intention of having children!

    The coil is reversible though should you suddenly become broody!!

    Don't listen to the horror stories, take some painkillers beforehand and practise breathing or relaxation techniques. If it sorts out the pain it's worth it. Good luck.

  • When I realised that I would never have children it was like a bereavement, but one with no ceremony and no sympathy from anyone.

    Having the Mirena took away even the slightest possibility of a miracle happening and it is really hard to come to terms with that door slamming shut.

    However, now my Mirena is settling in (don't expect miracles I'm 7 months on from insertion) I can see that I have opportunities to do more with my life, I feel physically stronger and I have to remember that no one gets everything they want. I am now able to direct the energy I have into doing something really worthwhile instead of raising children and I am proud of what I am doing.

    Big Hugs for you,

    xxx

  • Thank you adding this. It has helped me today. Xx

  • I am soooo where you are Libmonkey and struggling TODAY with this very issue! I'm also 37, having surgery on Monday on my stage 4 endo and bowel complications... with a potential outcome of mirena coil or zoladex for 3 months+more surgery then mirena coil. I've also not really been that bothered by starting a family and it's clear I'd have to work at it, but I'm having a bit of coaching at the moment to try and decipher how I actually feel.

    As we seem quite alike in terms of circumstance, would it help to have a proper chat about it? PM if so!

    Xx

  • I won't go into detail about my experiences with the mirena because it won't be at all helpful, but I just wanted to say that I understand about the baby issue. I've been on hormones for 16 years of one kind or another. Tried to stop the pill for a while but the symptoms were unbearable. I've also got the problem of being on very high doses of morphine, the fact that I have no libido ever since I stopped an extended course of zoladex 4 years ago and I'm too ill to look after myself let alone kids. Despite not having sex with my husband for over a year, it still really upset me to when the coil went in. It's strange.

    What I would say is that depression is a common side effect of the mirena and if you're already feeling low you might struggle so you need to stay in touch with your doctor.

    X

  • Hey there, I understand your nerves, I was the same before mine was fitted last June. He had also tried to do an internal exam but have up because it hurt so bad and I was in tears. He offered me an anaesthetic which I agreed to. The injection is done in your uterus, it was ghastly but I didn't feel the coil go in at all so it was worth it. I'm 39 without kids so I totally understand how you feel about it, I'm the same. I've had fertility issues due to having PCOS since my teen years so I've known for awhile that kids aren't possible but it doesn't make it any easier. My brother has had 2 kids so far so at least there are grand kids for my parents - she is understanding about it but my father isn't. At least he doesn't ask anymore but it doesn't stop me feeling useless. I tell myself it wasn't meant to be for some reason. I get sad seeing my husband playing with my nephew and niece and he would've made an awesome dad but what can you do.

    Going back to the coil, it's worth a try in case it works. If you're worried about the fitting, I'm sure you could ask for the anaesthetic. I had bleeding for a few days with it and period style tummy aches but within a week the blood was gone. I still had norethisterone in my system so maybe that's why it stopped. It's been in for 7 months now but there has been no difference in pain yet. All women are different - I've read it taking from 6 to 18 months to work.

    Annabel x

  • hey there, firstly having the coil does not by any means that you cannot have children. obviously whilst it is in place this is true, but it can be taken out within seconds and it will only take a few months for your hormones to go back to normal if you decided to try for a family. They dont want to take it in and out because it costs money, but its your right so do not be pushed around :)

    I have the mirena coil for endo and it has made a difference for me, although 2 years after i had it put in i am far from pain free. unfortunately there are very few cases it seems where any of these treatments are a complete resolution. i also did not get on well with the pill and i chose the mirena also because of very heavy bleeding ( i have no periods at all now).i would suggest that if you have not had children (as you say) then you might consider asking for a general anaesthetic to put it in. when you have not had children, and also when you have endo and are already sore in there, it is very difficult to put in. they tried three times on me in the space of a month and couldnt do it. they then offered me a GA and i woke up and it was in already- end of.i dont think it is this bad for everyone but i know a lot of people for whom it was.it all comes down to money in terms of why they dont offer GA to everyone, but i think if you have endo you should have a good case to ask for it if you wanted. also, beware that with the coil it can take a long time to have any effect as it is more gradual than the pill. i had it for 12 months before i really felt any better.but now iv had it almost 2 1/2 years and i wouldnt take it out. i know what you mean about kids though. i often think the same thing because its a big decision, not to take it out, but to put it back in. i dont think i would ever have the coil put in again to be honest. once it comes out in 2 1/2 years thats it. im sorry if my post comes across as negative as it was not meant to. there are pros and cons. its just up to you to decide what is best for you, and dont feel that you cant change your mind. its your body and your life. xxx

  • I understand completely. This is how I feel too. I'm having a coil fitted on Monday. I've got to go to hospital to have it done, because my GP wasn't able to do it. I'm dreading it, having heard so many horror stories, although I have heard some good stories so am trying to keep a positive perspective.

    I'm also feeling really upset about the children issue. I'm 38 and am not in a relationship so the only option I can see is trying the donor route. But I don't know if I can have children - before my husband and I split up (and before my endometriosis was diagnosed) I stopped taking the pill and although we weren't specifically trying to conceive, I never did. More and more of my friends and acquaintances are having children and it's bringing it all home to me. I really would love to have a baby although I think I've been denying it to myself for the last few years. My mum and dad would absolutely love to have a grandchild and I find it difficult to talk to them about it. I am also wondering whether I should have the coil given that I'm having these thoughts, but as others have said, if I do want to try then I will just have to have it removed.

    Sorry, I don't think this has been a very helpful post, but hopefully you won't feel like you are alone in feeling this way xx

  • Thank you all for sharing your experiences. It helps so much to know that I'm not alone in how I feel! I-m quite sure I'm going to have a few more wobbles over the next couple of weeks, but at least I can look back over your comments and try to go in with a more positive attitude. x

  • hi guys

    A lesson learnt when having a mirena fitted make sure the check your not pregnant first like i was.. it was a huge shock because my bleeding was so bad that in a month i was lucky to have a few days off so thought of getting caught was never a option for us..The day came and still bleeding bad they fitted it and i went home.. a few hours later rolling round the floor and fast thinking after my mum bless her was a nurse felt my tummy etc she rang the doctor bought a pregnancy test and my god i was pregnant wow a dream come true but it was thought it could have a ectopic by the symptoms i was getting so .we rushed in to hospital and had the coil removed they found it was a mm away from the egg so they started to checked every hour then every day and so on and my miracle baby is now 5 years and hes fantastic I Tuesday i go back in to hospital and even though i don't feel pregnant and still suffer with dreadful bleeding i will be making sure i have a a test first before they put me to sleep .. I had the coil fitted straight after my little lad and it was the best thing i had ever done although it took months to work very much worth it 2 years of no periods and pain and enjoy being a mum for the 2nd time pain free...my body started to reject it so it to be removed which the endo returned with force i really do want more children that's why i am holding off the coil at the moment but would def go back on it later in time xxx

  • I have been where you are. I am now on my second coil and adopted two children coming up to 5 years ago. The coil was the best thing I did after ther heart break of IVF. I knew I didn't want to be childless so husband an I threw ourselves into the whole adoption thing.it was such a positive thing to do after coming to terms with the fact I would not get pregnant naturally. The coil has kept me well enough to enjoy my children by stopping my periods. Go for it . There is no reason to be childless because you have endo and the Mirena. Best of luck x can they do it under general anaesthetic ? Your only out of it for mins .

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