Has anyone taken the Mirena Coil (IUS/IUD)? - Endometriosis UK

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Has anyone taken the Mirena Coil (IUS/IUD)?

Bchic77 profile image
16 Replies

I am considering getting on birth control after my first surgery which was in September. The doctor's highly recommend mirena coil but I'm reluctant. My husband is outright against it after he's seen all the possible side effects online. I am torn since all birth controls/hormone medication have bad possible side effects. I have always been against taking meds but I don't want my endo to get worse... What has been everyone's experience with birth control?

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Bchic77
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16 Replies

Hi

I had my first lap last November and they fitted the mirena coil whilst I was under. The coil didn't seem to make any difference to my endo, I continued to bleed, still had hideous pain and started to get panic attacks again the same as when I was take Cerazette. I had the coil removed last week and I continue to bleed. I have been bleeding now for nearly 3 months and it's starting to wear me down.

On the other hand I know that the coil does work for a lot of people. I would say give it a go, at least if it doesn't work it only takes 5 minutes to remove it. I think it is worth trying, you never know it might work for you.

I have put on over a stone in weight since having it!!!!

Remember the side effects don't effect everyone.

Good luck

heidi30 profile image
heidi30 in reply to

hi miranda ,ive had the coil since last may and im still bleeding everyday! costs me a fortune ! i havnt put on weight .the coil has done nothing to help me as between may and nov everything came back and i ended up with 3 lots endo and bowel bladder stuck togethern back to theatre at end of nov so how can it of worked ?surgeon said it hasnt but then put another coil in during op ? seems mad to me . i dont know if its the fact that im still in constant pain etc etc but i seem to be very moody and up and down could just be last year catching up with me as i had a very bad year lost my mum etc .do u find the coil makes u moody n sad n cry ?xxx

in reply toheidi30

Hi Heidi

I did find that I got stressed very easily and could cope sometimes. I do manage to work full time, so I don't really have time to think about myself alot. I must admit since having the coil removed I bled heavy for about 5 days and stopped today (well for a few hours) and I can no longer feel it. I am due to go back to the consultant next month to discuss surgery. At this point I will do anything to get rid of the pain.

I think the fact that you have this horrible disease and you haven't had the best year will make anyone want to cry. I hope you have support from other family members. xx

Gemsau profile image
Gemsau

Hi,

When i was given the mirena, my periods stopped completely, but i still had lots of pain, i kept going back to the GP and he kept telling me to give the coil a chance and it would settle. After nearly 10 months of being in agony and complaining to my GP, they finally done some swabs. It turns out the coil had caused a massive infection, and had to have it removed urgently and was given strong Antibiotics. If it had been in much longer it could have caused major problems.

I know this is probably not what you wanted to hear but felt you needed you to know, i do agree with your husband but thats because of my own mishap, but i know lots of people who have had the coil fitted and it has worked for them.

Everyones body reacts differently.

Hopefully this helps, and not freak u out x x

Lizzie71 profile image
Lizzie71

I had the coil fitted in 04 when I had my lap and removed when I had my hysterectomy in 08. It did help to start with but obviously if it had worked I would not have been in that much pain that I begged my cons for a hyst. Unfortunately I kept my ovaries and here I am again in agonising pain wondering what the hell to do next. GP is useless. What now? Who knows. Thought about having my right ovary out but that will still not be the end am sure??????

Chrissie66 profile image
Chrissie66

With regard to my bleeding, having the Mirena fitted was the best thing I ever did. Yes, I have put on weight, and yes, the pain is still there, but the bleeding has gone from 2 weeks a month of full on flooding-to-anaemia to a bit of pink spotting some months.

Also remember that people normally only report bad experiences, not just with the Mirena! but with everything. If you get really bad service from a travel company, for example, you'll tell everybody about it, but you probably won't have told everybody about the fantastic service you had the previous 10 years. For every one person who has had a bad experience with the Mirena, I bet there are hundreds more who have been pleased with it, but those opinions haven't made it online. And at the end of the day, your own personal experience will probably differ from all of those put together.

As has been said above it doesn't suit everybody, but as has also been said it only take five minutes to put in and take out, I would at least give it a go.

tinker241 profile image
tinker241

well i have been on the coil the first time and had to have it removed as i had an infection then all cleared up and i tried to put it off for a long time and then finally had it done two years ago but i was in agony for 3 months straight and i begged to have it removed and i never felt so much better and then been on various pills since then that is over a year!! i have 1 more to try and then try go on Depo-provera injection and see if that works and i am so miserable at the moment and it getting me down badly and i am totally all alone and dont know what to do!!! as every time i write on here or on facebook page for endo (closed group that means no one else can see it and i written on there and no response from anyone and they dont wanna listen to me at all and i find it all crap!! i just leave it to myself and my family and friends dont seems to understand at all!! sorry to rant!!1

Bchic77 profile image
Bchic77 in reply totinker241

Tinker thank you so much for responding. I'm sorry you haven't gotten the response you wanted. I compeltely understand this feeling of being alone. Although endo affects 10% of women so few people know about it and in many ways I don't want to be the one to educate them. I fear explaing the symptoms and getting the same judgements I had always gotten for them inb the past. "it's all in your head" "everyone has cramps, dont be such a baby" and so forth.

I will wait before trying the coil. I have actually never tried birth control so I will give that a chance first. I figured if that doesn't work then I will definitely try the coil. Last thing I want is to have another surgery. Although the lap wasn't that bad I don't necessarily want to have too many. I am 29 and fear endo will play a strong role in my future so I am trying to minimize symptoms. I have actually started on the gluten free diet. So far it's helped but I still have moments where I devour pasta or pizza. Needlessly to say the next day I feel horrible but... well, it's a work in progress. I have also cut out coffee completely which makes a huge difference for me.

Charli72 profile image
Charli72

Hi there,

I was given the Mirena Coil after lap surgery to remove my endometriosis. This was two years ago! The first six months were quite horrendous, with irregular bleeding and cramping. However, I perservered and got through that. Now I experience little to no cramping and periods have got so light sometimes no show at all. I do however, still get bloatedness and the occasional hormonal spots still before hand...

I hope that helps you?

Charli

Bchic77 profile image
Bchic77 in reply toCharli72

Thank you Charli. Yes, that helps. I have decided to first try birth control pills before I try the coil but I am a lot more open to the idea of using the coil. I figure I have a premenopause lifetime to take the coil, let me try the other options first. Thank you again.

tinker241 profile image
tinker241

yes Bchic77 i know how you feel about the pasta and pizza and that what i am dying for at the moment and havent ate those for at least a year now and i can have a small slice of pizza and that is fine but not a whole pizza and i go really ill!! ended up with diarrhoea and stomach cramps and it awful!! i have now tried dairy free but a little bit though like cutting down milk and cheese and never felt better than i was last year and i didnt know what causing me stomach cramp and diarrhoea!!! well good luck to you trying something first before the coil but it might work on you though!! and i have 1 tea but decaf but much much better than having caffeine too much and that does irritate you so try it with decaf and it far better as long you are not intolerance to dairy products and i am ok for wheat at the moment which were lucky as i had a little test done at herb shop which does the acupuncture place and it fabulous as i took the short cut as i am not waiting for the NHS to refer me to the specialist for intolerance and allergy!! at least i know now than later so hope it goes well for you

Saralou profile image
Saralou

Hey Just thought id share too.

In my first op i got the coil put in and started taking Cerazette. After my op i was still in so much pain still bleeding. It wasnt untill i went home to my GP ( i am a student and had my first op in cardiff where i study then went home to cornwall).

My GP at home took me off Cerazette and the bleeding stopped with in days. Once i got my Endo sorted out (which was 2 ops later) i kept the coil and it has worked like a dream. I dont bleed i dont even know its there. I've had it for two years and would recommend it but of course diffrent people need diffrent things.

My doctor told me the best thing for Endo is getting it removed and to stop having periods. The ops got rid of my Endo and the coil has stoped my bleeding.

I also think it really helps in what doctor you have. As my one in Cardiff could not careless and just wanted to get rid of me. Where as my one at home (Truro, Cornwall) was brillaint. They talked me thought everything and really put me at ease. I have regular cheek ups.

I hope this helps

Saralou.

_Megan_ profile image
_Megan_

The Mirena coil has been brilliant for me. If you are fine with the pill, I would say absolutely, go for it. It is a much lower dosage of progesterone. The side-effects your husband may have read about are most likely related to the progesterone, which you would already be taking in a much higher dosage with the pill. I'm progesterone-intolerant, so I only keep the Mirena in for 8-9 months and then take a few months' break. It controls the endometriosis extremely well.

alexmcd profile image
alexmcd

i was in the same boat last week and had the mirena fitted on monday, in alot of pain at the moment and bleeding is still a there but the only way to find out if it will work is to get it. Every option offered is different for every person you will only know if you get it and see for yourself. and if its not right for you it can simply be taken out and try the next thing, i say its worth a try. i hope you get sorted and feel better, and if you do decide to get it i hope it works wonders for you :) xxxxxx

Bchic77 profile image
Bchic77 in reply toalexmcd

Thank you so much for responding. I decided on the pill, Celeste, and skip periods on a 3/4 month basis. I have minimal side effects but some pain is still there with good and bad days. I will try this out for a while but will definitely keep the coil in mind for the future. Thanks again!

alexmcd profile image
alexmcd in reply toBchic77

I'm glad you have found something that suits you and I hope it works wonders for you :) I was in hospital last night due to my coil and im still in extreme pain, it seems to have made my pains 10x worse but I got an x-ray and its in the right place so it will be settling into its new home in my womb haha. im glad to hear the side effects aren't to bad for you either as they can often determine whether it stays or not. the best of luck for the future and I hope you feel better soon

alex xxxxx

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