mirena and endo.....does it help?

hi all

i am asking if anyone finds the mirena coil a useful tool to reduce endo.

i was diagnosed with endo after a routine checkup of the copper coil. the news i got told was devastating...huge cysts and fibroids. I was refered to the hospital who then made an instant decision...hysterectomy!!!..OMG did i have to fight for the decision change...i felt i didnt want my womb removed as most of the problems were outside of it. As it happens i will be goin into surgery in 6 weeks..this website has helped me to understand my endo tremendously.

the mirena has reduced my periods by 2 thirds but what it hasnt had any affect on is the cramps and the bloating each period. i look and feel 6 month preggers! as for my moods, its had an affect on reducing my anger but also reduced my sex drive to almost zero...

i get severe lower back pain with cramps in my abdomen. the biggest thing is the weight...i have gained weight and when i try my up most to loose it, i feel i have put it on!! i cant win...the other concern is that the cysts and fibroids may still be growing making my belly protrude out...

is anyone else having such problems?

to top it all my consultant asked me to loose weight..saying it would make his life much easier in theatre..the cheek of it..!! i know im 2 stone over weight but i dont think they understand how difficult it is to loose it...

i would like to know if anyone has any tips on that...thanks

22 Replies

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  • yes you are right 'justmichelle' its different for all. i too had heard the bad things about it but took the risk...

    may i ask how ur lap went?..did u stay long in hospital.?

  • I had the mirena coil put in almost a year ago and it hasn't improved things at all!

  • I had the mirena coil put in about 4 weeks ago, and I have had spotting and cramps ever since so far. Could be early days but I'm not sure...

  • I had mirena put in July 2011, and am still waiting for it to 'settle down' - although after about six months my periods are lighter as I was confined to house with them so it has helped that side of things, but I tend to bleed almost everyday, lightly, I never really know when I'm having my periods anymore except if I get the sore boobs etc - still suffer all the same pain I had though, the cramps, my womb contracts and at least two days a month I spend twelve hours or so literally going through labour pains, proper contractions, lower left tugging pain with lower left back pain (large ovarian cyst, poss choc cyst) - but I have also heard that the mirena has done amazing things for some women so I think it's always worth a try, it's not for me and I think 18 months is long enough to try, I am on waiting list for an ablation and they are supposed to be doing a lap at the same time, they refused last April and some young lady doctor very sarcastically told me if I lost 5 stone they would do it, it was said in a way as no way could I do it, and also was told that if I lost weight all my problems would disappear as apparently only overweight women get ovarian cysts, fibroids and heavy, painful periods - I have lost that 5 stone since last april and still experience the same problems, but I think my body deals with it much better xxx

  • yes i too still have all the cramps and dont really have a dry time in the month as before...well done to loosing all that weight!!

  • I can't believe they said all your problems would vanish if you lost weight. That is rubbish! you can get these problems no matter what you weigh! xx

  • it seems as though ladies that we have to accept that doctors and consultants are the experts but they lack skills in empathy and therefore dont always LISTEN to what we are trying to say...i hope things work out for you all...my pre-op is in a months time and i will makes sure i write all questions down that i want to ask about the whole procedure and after care..

  • I had the Mirena coil in March 2011 as my last chance before hysterectomy. I was also put on Prostap for the first six months and needed Noristerone as well for a couple of months to stop the bleeding. Those first couple of months were bad with pain and bleeding but since then I've been really well. I have had v light periods, and no pain to speak of. Recently though I have started to have additional light irregular bleeding. For me the Mirena coil has been brilliant and I feel better than i have done for years, I have put about one and a half stone in weight on though which may be a consideration for you.

    I hope you find a treatment that works for you. Take care.

  • Hi

    I had the mirena inserted during my lap 4 years ago.

    It stopped working after 3 years so I've had my old one

    Removed and having a new one fitted next week.

    Having re-lived my heavy painful periods for 4 months while I consider

    Having a new one, I can't wait to get it back in!

    Bleeding is much lighter, hormones more balanced so

    I don't feel constantly angry or sad, I don't have the worry of

    Leaking when I am on my period and the biggest thing for

    Me was I lost 2 stone in weight! I had tried many times

    And am trying again now while I have no mirena.

    Nothing has worked. So... For me the mirena was fab!

    But it's not for everyone and I did give it over a year to settle.

  • I had the Mirena coil put in April 2012 and it works for me a treat. It was meant to stop my periods altogether however that hasn't happened yet. But it has reduced the pain massively and i dont really get any problems with it. It defo works differently for everyone. I hope everything works out for you as you start feeling better. We all know the pain your in and i think we can all agree its absolutely horrendous :( good luck.

  • In my experience the mirena cool didn't help at all. Still had awful irregular painful periods, but no one knows how your body will take to it. I have a friend who found it amazing x

  • I had the Mirena about 3/4 years ago after a lap. After 6 months no periods but the pain did not stop so I started taking the pill, which I have taken continuously (no 7 day break) since. Sadly, this week I found out the endo has returned and they have suggested a Hysterectomy , or another lap, or nothing until I can not put up with the pain...

    So, it depends what you mean by 'work'. I think with the pill it stopped the pain but sadly not the endo itself... but I am guessing the Dr suggest it because it stops/ reduces it for others...

    Re the weight - for sure all the meds put this on! I put on at least 2 stone with prostap and other bits they popped me on over the years. mumsnet has a good diet for quick results that they say is for heart patients to lose weight before surgery:

    netmums.com/coffeehouse/wom...

    Realistically you can lose 7lbs a week - I try and do it once a month and eat sensibly for the other 3 weeks.

    Good luck xx

  • I had ablation of endo followed by GNHr injections for 9 months then had mirena fitted - this was Dec 2011 - my periods are now so much lighter and pain has dramatically reduced so that I feel I have my life back somewhat! I was very reticent to try it after hearing so many horror stories. I out on 3 stone with injections and has taken me this long to lose 1 and a half stone. The other weight is taking ti's time to shift though! I also changed my diet - eat only food I have prepared, no red meat, yeast-free, lots of fresh fruit and veg, almond milk, peppermint tea and trying to up my exercise again. I used to run before I was diagnosed (suffered over 20 years with little response from docs) but I kept collapsing in pain whilst out running so put me off. Just building myself back up to it by going to rumba and walking a lot. Good luck whatever you decide, but sometimes it's worth trying things - we are all different and it may work for you. I am glad I tried the mirena. x

  • Hi, I had the Mirena put in about 7 months ago after adenomyosis was found in my womb via MRI scan. I wasn't bleeding before it was fitted as I was on norethisterone continually for 3 years. I stopped the norethisterone once I'd had an ultrasound to determine if the coil was in the right place. I've still had no bleeding but I've had no difference in the pain either. After I was refused a lap about a year ago because of my weight, my consultant changed his mind and I'm now having a diagnostic lap on 30 Jan. The nurses I spoke to at my pre-op said the lap is dangerous no matter what your weight is and that they have dealt with women much heavier than me (I'm about 5 stone overweight due to having PCOS since I was a teen). I read a lot of horror stories after having the coil put in as well as a few success stories. I don't feel 7 months is long enough to notice much change. Whether things will improve yet I do not know. I have days where the pain is manageable followed by more days where the pain is excruciating. For the past week I've had the energy of an ant and sleep all the time. I'm lucky my husband is so understanding. The Mirena seems to affect everyone differently so it's worth trying it just in case it helps.

    Annabel x

  • I had mirena 12 years ago and am on my second which is nearing the end of its life, I can honestly say its saved my life, I remember it took along time to settle and towards the end of the 1st 's life I started to have spotting but the second has been a dream, apart from some ovarian pain each month (cyst?) my life has improved beyond my dreams I lost 3 stone and have kept it off, no more monthly mood swings that last 3 weeks flitting between homicidal and suicidal, no periods at all for years now! I'll be 46 when its due to be replaced but I'm not sure they will, dreading that prospect. It may be worth a try but give it a chance unless the pain with it is worse than without. My mum would say the proof of the pudding is in the eating.

  • Hi I just wanted to tell u I was advised to have the mirena coil fitted. Which I did 3 yrs ago, was brilliant never had a period, but in the last year all went wrong, from feeling pregnant, bloated, still craving sweet stuff, to now bleeding everyb3 weeks, I was rushed into hospital twice to be told I had 215 cm cysts on my ovaries:-( n was then told casually that it was very commen for women on that coil!:-( so I'm having mine removed when I go for more surgery in feb:-(x

  • I have been advised to have to coil fitted after ive come off my temporary menopause. I have read so much bad stuff about it but its only option i can use. I ahd it fitted a few years ago but was in agony for 3wks so had it removed to find out it had falling down into my cervix.. Ouch!! no wonder it hurt so i am a bit nervous for when the time comes. If the coil doesnt help with cysts then why is it they are given us it? I find it hard to trust doctors now after its taking years for me to finally getting a lap done and to then find out it was severe endo i had, and if they had just listened to me it wouldnt have got so bad. Hope everyone is well and getting sorted as its amazing to speak with others who understand. x

  • I had the mirena put in four years ago. After the initial bleeding stopped my periods were very light. Unfortunately it had no effect on my Endo!

    After 11 months I demanded it was taken out as I was having severe panic attacks and anxiety. I had read on another forum that this was a common side effect of the mirena!

    Good luck.

    Barbara. X

  • I am soooo glad I've read all this. I am due to have the mirena fitted on March 19th. I was diagnosed with endo about 11 yrs ago and now adenynmyosis. My symptoms have nose dived in the last yr so I am constantly bleeding and constantly in pain. I've tried every lotion and potion there is and in desperation I am having the mirena (but have been terrified of all the awful stories !) It's good to know there are some that have been helped. I am probably going to go down the route of mirena and endometrial ablation and continue my 'natural menopause dance'...I'm 37 and it really can't come quick enough... have gone back on anti depressants today which I really didn't want to do but something's got to give :-( x

  • I've had the mirena after the endo ablation and it worked fantastically for six months...but then my periods started again and with them came the pain. Mind you, it's better than nothing x

  • I've had the Mirena coil for two years, the first month was bad but I'd just had surgery and was on Prostap as well so don't know if the coil was to blame, in the second month things improved and I've since had two almost pain free years with only light bleeding. I still had some bloating but not like before, for me cutting out gluten products helps reduce bloating and pain in bowel as well. Something does seem to be going a little strange now though but for two years it has been a life changing experience. I could do what I wanted when I wanted without any endo worries. For me it has worked better than any other treatment and I've tried most of them! This was my last chance before hysterectomy and I'm so glad I took it. Mirena doesn't work for all. But some of us are very grateful for it. Hope you able to get some relief.

  • mirena doesnt work for all and i must say it made a dramatic change to my periods...i have a pantyliner period as i call it...however, my pain has doubled since fitting last september. am going for my laproscopy next month so will see what that reveals..

    what else i notice is that this coils seems to do the trick for a short while before other things start happening

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