Fingers crossed this Mirena coil works 'cos nothing else has :(

Just joined and thought i would share my wonderful < touch of sarcasm > experiences of Endometriosis with you all..

I am now 40 and after collapsing at work with bad stomach cramps when I was 26 I was given my first laparoscopy and diagnosed with Endo. I was given monthly injections (in the stomach) which gave menopause-like symptoms (great, no periods = no pain) but after @18months and lots of hot sweats (great in the winter not so much in the summer), mood swings and extra weight I couldn't hack it.

I decided to test the waters and gave my body a break and was ok for @6months (ibuprofen + hot water bottle) but then the endo flared up again. It was back! After my 2nd laparoscopy and clean out I decided to continually take the pill which was great (no periods = no pain). I did this for 6 years but knew it couldn't go on as i was getting too old :(

So, I had another break and, again, after @6months (more ibuprofen + 2 hot water bottles) it was back with a vengeance. My gyno suggested that as most of it was around my left ovary to have the ovary removed. So i did. Man it killed but surely it would work?. No. I was fine for @12months but then the pain started again.. not being able to stand up or sit down, like having a red hot poker up your jacksy, feeling like you're carrying 10 house bricks in your womb... you know the score.

So my gyno tried me on Cerazette. BIG mistake. I was fine the first couple of months - the odd twinge here and there, bearable - but the third month!!! i'd been bleeding for 15 days constant (my previous record was 11 days and that was in my teens) when i went to my GP and he wanted to give me tablets to stop the bleeding but still take Cerazette! No thank you. So i just stopped taking them. That was 6 months ago.

I saw my gyno last week and had the Mirena coil fitted. Ouch. So i am now going to give this a try. But what happens after the 5 years is up? Will it work for me? If not, what next? I'm already worried about the side effects (my leg's gone numb) and it's only been a week! The thought of a hysterectomy is not a welcome one but to know the pain will stop (though this isn't guaranteed) it is becoming tempting...

And to think I only logged on to check out my symptoms for side effects and i've ended up writing war and peace. If my babbling helps at least one of you then i'm glad. Because it's made me feel better knowing that i'm not alone on this one.

Take care y'all x

4 Replies

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  • Make sure you give the mirena plenty of time to settle down, at least 6-12 months. I had mine put in July 2011, after 12 months I was still suffering the same amount of pain, but it did help with my very heavy 'make me housebound' periods, the flow was much much lighter, but I did have bleeding everyday pretty much but just light. After the 12 months it was agreed they woud take it out and do an endometrial ablation, the date took so long for this to come through that I ended up having a lap at the same time, which was done last week. I can honestly say that the last three months the mirena was in was when it was at its best, my daily light bleeding had almost stopped and I was having a period every3 weeks, and I'm almost regretting having it taken out, because in the space of a week I'd gone from living quite a good life, in pain everyday but coping with it, to now actually having a diagnosis of endo and a hysterectomy inc ovaries looming ahead, so in some ways I wish I'd left well alone - but yes, give it time, everybody is different so you may not experience too many bad things with it xx

  • First off the mirena will take around 5 months or so to kick in, so be prepared for bleeding and painful periods till it does get to work. When it does WOW, but it is a long process.

    Then the mirena is supposed to work for 'up to 5 years' it could be that it only lasts a couple of years or possibly longer than 5, depends on the implant itself. When it fails or runs out then you'll need to consider having another put in and go through the process again.

    Mine was ace, no periods for over a year (best year ever since i was 13 pain wise) and i'm mid 40s, so from that respect it's fab, but I did have a period a month ago and feel bloated and ready for another which is a worry. So I am waiting day by day now to see what happens and whether I need to get it replaced and start again.

    I'd still say it's definitely worth sticking with, even with tweeks and twinges, it's much better than full on periods by a long way.

    If it works however long it works, once it's finished you get it replaced if you want to and off you go again.

    The drugs you were offered when on cerazette to stop the long bleeds was probably tranexamic acid or others like it. They are clotting drugs, you can't take them for long, 3-4 days in a row per month max but if they work they act by clotting the wounds where the menstrual lining shed away and reducing or stopping the heavy bleeds. It's hit and miss, if you haven't managed to stem the flow after 4 days you have to stop taking them and just wait till mother nature does her job. But if they do work it can curtail bleeds, which is something to be greatful for.

    They are monster tablets though.

    Worth having a few on prescription just in case needed.

    I wasn't taking them every month, just when the bleeding got to 8-10 days and didn't show any sign of stopping. I've always been a heavy and prolonged bleeder. Having the mirena work has been amazingly liberating, it really has. I hope it works out for you.

    Failing that, if you're definitely not in the market for parenting then having the lining of the womb fried is a possibility without losing it completely. It's called M.E.A

    microwave endometrial ablation.

    hysterectomy-association.or...

    That should at least sort the bleeding out, which is one element, but as for monthly cramps and pains, it's just management with pills and anything else you can find to help ease the situation.

    Or perhaps the arm implant nexaplon, which is up to 3 years of stopping periods.

    There are things to try before resigning yourself to hysterctomy. Hopefully not necessary and the mirena is right for you in the end.

  • Hi Hun

    I joined last week and I've had so much support from everyone. Just knowing we understand what you are going through makes all the difference & that you are not alone or turning into a crazy. I'm 27 and having a hard time at the moment with my first official major flare up. The mirena coil is the option my doctors want me to take and I am unsure.

  • Hi Newbie too

    I can't speak for the Mirena yet, it might work it might not but i've got to give it a go. If this is the first option that the docs have suggested then i would be inclined to go for it.

    In hindsight, rather than having ops and bits taken out i wish i would have tried the coil sooner. Have you not tried the option of taking the pill continuously? This was great for me... As you are still young enough, it is an option and it may make it easier for you. But this is only a temporary solution.

    Reading the blogs on here has made me feel somewhat better and also, i haven't got it half has bad as some of the women. Endo is a biatch.

    Are kids on the agenda for you? This is something else you need to consider. When i was first diagnosed they told me to get pregnant as it may clear it up! Yeah, but i'm not looking to have kids! So the search continues..

    Good luck and fingers crossed for you too chick. Keep us all posted and how you are getting on x

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