Hiya I was diagnosed with endo just over ten years ago and had laser treatment which reduced a lot of my symptoms for a while. Since then I have been very fortunate to have two children. However symptoms are now returning and after seeing the consultant today she has put me on the list for another laparoscopy as well as an hysteroscopy. The consultant has suggested at the same time that they also fit the coil ..... Pros and cons for this would be gratefully received, as well as what other options. Thanks
Pros and cons for the Mirena Coil please - Endometriosis UK
I had the coil fitted the other week there when I had my 2nd lap. I can't take conventional pills because of migraines and the implant just seemed like so much hassle with regards to side effects and constant renewal compared to the coil.
Since my op on the 17th I've had a light/medium period complete with cramps. I'm assured that it should pass but I am aware that some women end up with a constant period.
For me the coil seemed to have the least amount of side effects and most of the complaints I've seen about it is to do with the insertion, since I was out cold for my op anyways it was a good time to go for it.
I don't think I've really helped here but that's my limited thoughts on it
1) Mine has been an absolute miracle for my heavy bleeding. I've gone from having torrential periods to having a very light,almost non existent period.
2) once it's put it, there it stays for up to five years.
1) it hasn't helped my pain, if any thing it has made my cramps worse
2) some ladies (not me) spot almost continuously for the first 3-6 months.
I think it's definitely worth a try. If it doesn't suit you, it can be removed easily at your GP surgery.
The last time I saw my consultant and we spoke about treatments she recommended the coil to me as being the best option as I don't have much in the way of pain out with the first few days of my period but my problem is bleeding as I bleed very heavily for 10 days every month, but she did tell me that for some woman it isn't strong enough to stop the bleeding 100% so they continue spotting and need to top it up with tablets, that sort of put me off as why bother having it fitted if I'm going to end up having to take pills anyway x
Thanks for your replies ladies. So far I am not convinced to have it yet. I do get very heavy periods including clotting and with two children find it hard sometimes to go out on certain days during my period. I am lucky enough that I work from home, so can run to the loo when I flood, but socialising during my period can be tough and have cancelled things in the pas due to the pain and flooding! So from that perspective it seems the coil may help me. However all the other endo symptoms including the pain, constipation, back pain, etc etc are not reduced by the coil it seems. I know it has really helped some ladies, but I am not sure if it's the right thing for me. On balance so far in terms of the research I have done and speaking to some friends who have had the coil inserted, the feedback has been mostly negative!
Hello I am having the coil fitted under general tomorrow as well as having a few other things done. I was absolutely adamant that I wasn't going to try anything hormone based to help my endo since my lap in July but unfortunately
It has got a lot worse and I need to try something and my other option (being the injection that cause the false menopause) really worries me and I don't want that. I have thought and thought about the mirena and have googled and read all the horror stories and have asked questions on here and I came up with the following conclusion:
If something is working well, people very rarely shout about how good it is on the internet. However people are more than happy to shout about it when it's bad. This leads to a unbalanced view of the coil.
If it didn't work well for a lot of people, the company that makes it would be out of business by now. The fact is a lot of women swear by it.
Yes, the initial 3-6 months can be a bit tricky for some people with constant bleeding and pain etc but I have this everyday anyway and can't leave my house for at least a week every month due to flooding.
My consultant has sAid that although you need to try and give it time to settle in (3-6 months), she would take it out whenever I asked for it. I'm sure everyone else's would say this too.
Although it obviously isn't a cure, it slows/stops the endo growth which would hopefully mean no more operations and laps for 5 years.
So although I am worried about the 'what ifs', a lot of women I have spoken to on here and in person swear by it. They do all say try to stick with it for the first 3-6 months which scares me a bit but after that if it works it can be a life changer!
Whatever you decide, I hope you find something that works for you xx
I've had the Mirena Coil now for over 6 months on the advice of my first gynaecologist, a consultant that I wasn't keen on as he just seemed to follow a checklist rather than appear to consider me as an individual. Anyway, severe acne, no improvement in pain, depression worse but then I've never been able to tolerate hormone based contraceptives so Mirena didn't really stand a chance. They always makes my depression worse and give me worsened nodular acne. None of this was taken into account by this gynae - he wasn't the listening type. I was convinced to try by the fact that Mirena is a smaller amount of the hormone and in a place that is not supposed to leak it into the bloodstream. I'm not convinced of the latter at all, to be honest. Anyway, if you are prone to these issues then it may make them worse - but then the benefits provided by Mirena, as it has for many women, may make it worthwhile for you. I do personally think it is a good option, I'm glad I tried it but, for me, it isn't quite right.
The British Formulary 2011 says that Mirena should be considered with caution for women with depression. If you get depressed I'd think very carefully as I'm having a rough time. My new gynaecologist who is much more highly regarded and who specialises in this area wants Mirena removed and says he wouldn't have given it to me in the first place and that the problems I have aren't going to improve over time.
I would just like to point out one thing that not many people are aware of. Bayer is being sued due to Mirena and that may give some people pause. The cases are being brought by several hundred women in America due to 'insufficient training of medical personal so that they (gynaes and GPs) are unable to provide sufficient warnings of the downsides of Mirena'. Bayer stands accused of downplaying the disadvantages and risks. Please bear in mind though that America is a massive country and so a few hundred people is still a very small percentage. Although the number of cases of adverse events due to Mirena reported to America's Food and Drug Administration are considerably more significant.
I don't think it means that Mirena is necessarily a bad thing and it is still highly effective for many women. Just for some women it wouldn't suit and they may not have taken up this option if they knew the full facts - facts that their gynaes or GPs may not know either as the information has not been provided to them. For me, I have depression so perhaps shouldn't have Mirena - my GP said she'd never heard of depression being worsened and yet it is in a text as mentioned above which is readily available to GPs. Clearly Bayer hasn't provided this information with any clarity.
The cases in America are based on insufficient warnings being provided and then the following has happened (allegedly); migration of Mirena within the body, perforation (very rare though) and bringing on permanent menopause in women as young as in their 20s. The actions are being collated and are currently scheduled for 2015. There have been delays due to considerations such as case consolidation which Bayer wanted. The information is on the internet and not just anecdotally or on dodgy websites. I can provide more information or it is readily available if people want to look into it.
I really don't think that anyone should panic about the above - we aren't talking massive numbers. Mostly Mirena appears to be popular and successful. However, these are warnings that medical personnel are supposed to be providing so that anyone who may be prone to certain problems then have better information on which to base their decision.
Hope that helps.
I had my coil fitted at the beginning of April and I have had heavy bleeding ever since but I know people that have had it fitted and have never had a period again x
absolutely ecstatically happy with mine. wouldn't want to be without it.
Cons- it hurts a LOT to be inserted in some endo ladies therefore if you do not get on well with smears for example - painwise, then ask for anesthetic...better still schedule to have it inserted when you have a general anaesthetic for something else.
Cons- it does take a few months to kick in and that settling in time can be a disruption n hormones while your body adjusts, tweeks and twinges of cramps - not period pain strength but can be a bit more than uncomfy on occasions.
Cons- they only last up to 5 years, and you really get through the time at a rapid rate. Hard to believe i am now half way through mine.
Cons- the strings can on occasion get swallowed or sucked up by the uterus...but the good news is they can just as easily fall back down again of their own accord. this is only a pest if they are up in the uterus when it comes to having it removed as you would need to be refered to hosp for extra long tiny forceps to go routing around for one of the two strings.
Probably best in those situations to wait for it to come back down by itself unless there is some emergency reason for not wanting to wait.
Pros - Wow just WOW !! no periods, no PMT, no period pains, no floods or soiled clothes and bedding to be washed, saves a fortune on tampons and towels. You can plan a life again, keep commitments to work, training courses, social events, go swimming, on holidays and generally enjoy so much more time each year.
A normal period experience occupies a quarter of every year /3 months solid.
A heavy painful period often lasts for two weeks of disruption or more every month - ie 6months or more or period hell.
This is time you get back free to do what you want to do. to lead a more productive life. take up new hobbies, more sporting activities, take care of pets and kids and partner and household. Not curled up in bed on painkillers hugging a hotwater bottle.
Now for all the pluses, I still have endo, i have a cyst that is a nuisance some days, i have bladder and bowel endo bleeds, but all in all I am in a much better position to cope with everything else in life good and bad, without being plagues with the additional burden of rotten lousy periods. i wish to go d i had had the thing from 30 years ago (it wasn't invented that far back) - how different life would have been, and probably prevented my endo doing quite so much damage too.
it is only 20% of the hormone dose of BC pills for example, so if you don't have a great time with pills then this may be a much better compromise for reducing the chances of endo.
it doesn't suit everyone, but for all those it doesn't suit, there are thousands who are happy with it, they just don't tend to whoop with delight because they forget it is there and are getting on with life instead.
It is worth trying and giving your best shot to get through the settling in stage and find out how much better life is without periods. Even if there are some niggly side effects for you, you can weigh up putting up with them or going back to having full blown period hell.
Best gadget or medication I have tried for periods by a long mile.
Being offered the chance to have it installed correctly while you have a general anaesthetic is a chance I would thoroughly recommend you take. It's a golden opportunity not to be missed as the getting in put in is the worst part, removing it if it doesn't suit you is so much easier.
any effects of the mirena are reversable ones if it doesn't suit you. Once removed periods return to normal.
I can't thank the Mirena enough. At 39 almost 40 my periods were unbearable like all endo sufferers! However at this stage I didn't know had it. Saw a GP (not my own) who said try the Mirena if I fancied it as I suggested it to him. 6 months of settling down I was starting to feel so much better. Yes ,daily spotting, annoying but no more heavy periods ,PMT was irradicated , thank god ,that really scared me I was so evil! So the spotting stopped, the periods never came back and I continued with life. It wasn't until a year later when I returned to MY GP with complaints of pain when intermate lead to my diagnosis of Endo. I'm now 44 and from then till May last year my coil remained insitu . 1 laparotomy, 1 laparoscopy and finally a full hysterectomy it stayed with me all the way. I was probably more sad saying goodbye to my trusted friend than losing my bits. The only negative for me having the coil is how it masked the severity of my endo perhaps things might have moved even faster and I might not have got to the stage I got. However it had undoubtably given me an easier journey with the Endo and I Thank it for that. I just wish that it would suit every woman and relieve them of the torture of this awful disease. Good luck with your choice and as previously posted we always read the negative posts and rarely the positives . Hugs J
I had it fitted the first week of December. Immediately I started having daily headaches and 2 -3 migraine attacks per month (vs. 2 - 3 per year before Mirena). I would feel dizzy and without any energy all the time. Also, I have never suffered from anxiety before and after Mirena I would have anxiety attacks all the time. The side effects were so horrible that I couldn't take it anymore and had it removed yesterday. Immediately I felt relief from the anxiety and haven't had a headache today. Not sure if my side effects were common (there are a lot of stories out there, but obviously it's common that people that had a negative experience will go online and post about it). I do know that I couldn't deal with them.
I had mirena fitted beginning of March during long op for severe endo. I'd already refused it back in Nov but thought I'd give it a go. Had bleeding on and off since and clots but nothing like pre coil. I'm going to give it the 3-6 months to settle but I'm sure mine will be fine by then. It's worth a try and can always be taken out.
Hi ladies thanks for all your responses re pros and cons for the coil and sharing your experiences. Still waiting for surgery date so still have time to make up my mind about the coil!
Hi Speshul, it's a tricky decision to make, I was only asked on the day of my surgery if I'd be happy to have one inserted if they felt it was necessary. I agreed but had no time to do any research, obviously it's best to have it inserted during surgery as you don't feel anything and you're not sure if the pains after surgery are from that or recovery.
I've had it a few years now and for the first 9 months got on pretty well with it, I did get some acne and a bit of weight gain and then started getting some cramps again so i was advised to take the contraceptive pill at the same time which I've been doing ever since. The acne stopped and the weight has stayed the same, I don't seem to go up or down.
I still get bloating, constipation, cramps and back pain, but on a much less scale than before. i haven't had any periods, only some minor spotting every now and again. It's hard to say whether it's the coil or the use of the coil and the pill that helped me, but i'd recommend it based on how I've been able to get on with my life last few years.
Only drawback is that it can disappear, my strings were quite long and I could generally feel it whenever i checked. I stopped the pill a month ago and went to to the drs today to get the coil removed so I could start trying to conceive. I hadn't been able to feel it for a few weeks but thought the doctor would be able to, but she can't see it either. She thinks it's either come out, but that i probably would have noticed it, or that it's gone further up. I asked whether it could have embedded somewhere and she did say that was rare and she'd never seen it but I have to wait now for an ultrasound to check. The waiting list is 6 months but it could be sooner, I can't wait that long to find out where it is! I'm really worried now, I'm praying it is gone as the procedure to remove it if it has gone further up sounds quite painful!
If I hadn't had this issue I would pretty much be 100% for the mirena but that might go down depending on the outcome of the scan!
I had mine fitted at the beginning of March and so far I am really pleased with it, to be honest I haven't really had any side effects that have caused a problem. I had a very small amount of bleeding for about 3 weeks but it was more of a dirty wipe but it was constant. I had got to the stage with my periods that they were effecting my life and I was fed up with that. I am just hoping that this continues because at the moment I am really pleased I had it fitted.
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