mirena coil stats please

just wondering if anybody on here could describe their experience of having a mirena coil.

mine has been in for almost a year - it was put in as my symptoms were extremly heavy periods, to the point of not able to go out, they were irregular which meant i could not even plan my work around them, i would spend at least 3 days in labour like pain, they also said i had a thickened endometrium (lining). they said i had cysts and fibroids but nothing to worry about, and that the magic mirena will sort out all my problems and almost stop bleeding altogether which in turn will stop the pain.

almost a year on i am still bleeding for at least 50% of the time, not so heavy granted, but with each period it is getting heavier again, but it is not making me housebound like before, yet. my labour like or contractions last for about 7-8 hours, but i still get them each day i am bleeding - when i'm not actually bleeding i am either spotting or i get redish/pinkish mucous, literally i can feel it running out of me, sometimes i wear tampons just for that, but i cannot remember what it is like to just put on a pair of pants without a sanitary towel, liners are not enough. i still have daily pain, and i have the contraction pain even when i'm not on my period sometimes. i am convinced my hair has thinned, my husband says no but i'm not stupid, and i'm a hairdresser i know my hair is not as thick especially on the top, it is greasy all of the time too, and about 3 months after having the coil i did have a lot of extra hair shed.

anyway, just wondering how it has worked for others, as i feel its not really working for me, but am really scared to have it taken out as at least it is alowing me to do some work and other stuff, but i do get really upset about my hair.

17 Replies

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  • I tried it and had it out after 2 weeks, couldn't handle a) the pain and b) the symptoms from the progesterone. The gyne assured me there wasn't enough progesterone in it to give symptoms, but that's rubbish IMO. I had constant migraines, just felt rotten.

    I've used progesterone before and ended up being put on testosterone to counterbalance the effects (lack of sex life, felt like a zombie). Horrid stuff. Never had the hair issue (apart from the greasiness you mention) but stress made me lose tons of hair once...

    Have you finished having children? I had an endometrial ablation done as I don't want kids and it is AMAZING! No periods to speak of, no more labour pain... still have endo pain, but at least I'm not floored for 2 days every 2 weeks unable to stand up any more..

  • oh yes all done with children, they are 21 and 14 lol, i had a quick google at what that is and will do some more research on it as it sounds just the thing - thank you xx

  • seen my gp today, she is going to ask gynae to consider removing the coil and doing the endometrial ablation, fingers crossed they do it for me, thanks for letting me know about it, i'd not really heard much about it but did some research and it sounds the best thing for me to have so i can rid of this coil - i know it wont help with the pain, but at least its something xx

  • Hiya

    I had mirena in but taken out after 3 months. Had constant bleeding (varied light to heavy throughout cycle) and pain got worse rather than better. Have now been put on prostap injections, finally working.

    xx

  • I use the Mirena and it works well on endo for me. I prefer it to the pill because like nixhaz I'm progesterone intolerant. (nixhaz - they tools me the same thing at first - "not strong enough to cause side-effects" - but that tune's changed in the last couple of years. I takea break after 6 months.) I haven't heard of hair loss as a reaction to progesterone, but do know it as a reaction to physical stress. If it's not working so well, what about trying a higher dose of progesterone, like the oral pill?

  • they've never mentioned the pill, i assumed i was too old (40) and overweight lol, will be seeing gynae soon so will go in armed with lots of info and questions as to what i can try xx

  • I had mine put in when I had my lap for Endo, 4 years later I had it out when I had my hysterectomy. It didn't work for me pain wise at all! I always get greasy hair, everyday I have to wash it! Why? I have no clue! Interestingly tho my daughter has Endo too, as a child she had a full thick head of hair but the older she has got the more it's thinned out. Never really connected the two just assumed that's how her hair should be??

  • I wonder how many women need to tell the gynaes about these rotten side effects before they actually acknowledge it is the drugs and the hormone altering effects of them. It's time they started listening to us and taking us seriously. There is a good supplement made by Lamberts called Florisene which helps hairloss--Lamberts say that low serum ferritin (iron stores) disrupts the hair growth cycle and I'm sure most endo sufferers must have low iron stores. It has iron and vitamin C and B12 and lysine in it so is quite safe. I won't suggest you check with your doctor because they probably won't have any experience of it!! Check the info out on the Lambert's website.

  • I had one put in when I got my lap, and like you I was still bleeding a lot. I found it helped with the pain as it was unbearable pre-mirena, but the benefits gradually became less and less, so they started me on zoladex injections. This stopped the bleeding. It's 3 years on and I've still got the coil and I don't suffer from the hair problems, but I know that now I have stopped the zoladex I will end up with that annoying bleeding again - grrr!

    Sorry if this reply is a bit jumbled, I'm just about to run out the door for work (joy!).

    Xxx

  • I'm sorry that you're still having such a lot of trouble. It sounds as though the mirena has done some good, but you're still having more bleeding than is normal, plus this problem with your hair (which must be very upsetting).

    It's worth trying to find out whether the bleeding and hair problems are actually caused by the mirena or by something else. I had some very strange bleeding that sounds a bit like yours and was caused by an ectropic cervix. This was nothing to do with my mirena but it was definitely unsettling and I was getting through tons of sanitary towels, so I really feel for you. Now that the cervix has been treated, everything's settled down again and the mirena itself seems to be fine.

    Because mirena doesn't release progesterone into the bloostream (unlike oral progestins), it shouldn't be affecting your hair. But something obviously is, and it's worth getting it looked at, especially since it's upsetting you.

    It might be worth going back to the gynaecologist and checking to see if there's anything else causing the problem. If your periods are getting heavy again then it sounds as though it's not thinning your endometrium as much as it should, but only a scan will be able to tell that.

    Good luck, and sorry you're having so much trouble.

  • i have an ultrasound tomorrow so will gp in a week or two and she will refer me back to gynae, so hopefully will see them in next 6-8 wks xx

  • I've had mine in for 3 years now and as far as the bleeding goes, it's the best thing I ever did. My 'periods' now consist of a couple of days of pinkish spotting, which is occasionally 'heavy' enough to warrant a lite tampon but I usually manage with panty liners.

    It hasn't done anything for the pain, but when it runs out, I'll be having another one put in because the idea of going back to constant flooding and always being on the point of anaemia, not to mention the money I was spending on sanitary products and washing powder, just doesn't bear thinking about

  • its good to hear it does work for some women, and although i'm not happy with mine, i have to be positive and see that it has reduced the bleeding from what it was, how long it will last is anyones guess as its getting heavier but at least at the moment i can still do some normal things without the extra worry of flooding through, and yes i am thankful that i am not anaemic, my sister was terribly anaemic and was very poorly xx

  • Hi, I'm sorry you're having so many problems and the hair loss must be upsetting. I'm only on day 3 of having my Mirena in but I'm glad I didn't read up on it before I had it fitted - after reading so many negative responses, I would have chickened out. I'm already wondering if it's going to be worth it, the pain I've had since Monday has been worse than ever. Constant cramping, stabbing pains and pain in my pelvis that builds up until I think something is going to burst before going back down to just pain. I've been on norethisterone for over 2 years as my GP thought stopping my periods would help with the pain but it hasn't. Within an hour of the Mirena being fitted I was bleeding heavily and had to go out and buy pads. It eased to spotting yesterday but it's getting heavier today. I really hope it helps because so far I'm kind of regretting having it done. The consultant had to inject my cervix with local anaesthetic and it's the worst thing I've ever experienced, I still feel very tender and sore. I hope things improve for you and you find out what is causing your hair problems x

    PS bit concerned reading about the increase in greasy hair - unfortunately I take after my dad and have to wash my hair every other day so I really dont want it to get greaser!

  • i must admit the first week was awful, the pain was unreal, they told me a couple of hours of cramping lol - when i went back in october last year it had been in for 4 months, they said give it at least 6 months, then they said give it 9 months and now well, i have to take the positives from it which i can still get out of the house when on my period, yes its still as painful and all the other stuff spotting etc is a pain, but my quality of life improved slightly, as its one less thing to worry about - as for the hair thinning thing, i read up on side effects the other day and its not a common side effect - i hope yours does settle, i think on these type of sites we only tend to hear the bad stories about it thats why i asked for all stories good and bad - hopefully things will move on for me in the next 6-8 wks, i have an ultrasound tomorrow to check if my cyst on ovary has grown, its not gone i know that much as i can still feel it lol, but either way my gp is referring me back to gynae xx

  • Irregular bleeding, headaches constantly. Missed my 6 week check up due to a migraine. Was prepared to persevere with it as knew I was running out of options as regards other treatments.

    Lasted 10 weeks until I was admitted to hospital as felt my head was going to explode. Lots of tests and 2 days on the ward later it was classed as a migraine episode but it was like no other migraine I've ever experienced :( The mirena was removed without argument after this and I remain convinced the symptoms were linked.

    I also had the greasy, lifeless hair, dull skin and a general feeling of being 'down'. I moved on to try prostap injections which I was dreading but they worked for me.

    You are right in that people are often very quick to dismiss the mirena but in your case you have given it 12 months and been patient despite the symptoms not fully resolving.

    Good luck with whatever you decide next.

  • Hi

    As I think someone else has said, your hair could well be down to iron deficiency. If you are bleeding 50% of the time for over a year its a real possibility that you have low iron levels, maybe not low enough to be anemic but low enough to have an effect on your hair. This is something that came up on channel 4 last night (supersize v superskinny) not endo, just hair loss, where they commented that iron deficiency causes hair loss and poor hair health.

    If you are not already taking iron supplements, maybe try that and increase iron rich foods in your diet (leafy greens etc) for a bit and see if your hair improves.

    Re. mirena - I dont have the mirena so can't give you my opinion but sounds like you have been very patient, good luck with whatever you decide x

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