Mirena Coil: Hi, Has anyone had any... - Endometriosis UK

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Mirena Coil

Starlet76 profile image
11 Replies

Hi,

Has anyone had any problems (big or small) with the Mirena coil. Is it worth getting it done? Please let me know if it has worked for you and made your life easier.

My specialist has recommended it but I have mixed feelings about it after reading and hearing other people's experiences online and through friends.

Please help me make the right decision.

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Starlet76 profile image
Starlet76
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11 Replies
Blue_30 profile image
Blue_30

Hi,

I was diagnosed with Endo back in April and had the Mirena put in during my lap. I'll be completely honest with you. The first three months were horrible for me. Painful periods, the first one particularly. Heavy bleeding and spotting in between too. Migraines (although I suffer with those anyway), my emotions were all over the place. Crying, feeling annoyed and very anxious. Lots of cramping. However I am now into my fifth month and the side effects seem to be settling. After just a couple of weeks I was ready to have it removed but I am glad I stuck with it. I still get hot flushes and tummy cramps but they are much better than they were and my monthly bleeding is reduced. (I am not completely pain free yet though). Hormone treatment reacts differently with everyone and even though I had read a lot of horrible stories about the Mirena, I felt I had to give it ago to at least know I tried. But that's just me. I have some friends who use it for birth control and they have had loved it. The only thing I can't relate to is what it's like to have it put in, I heard it can be quite painful so I'm glad I was a sleep! I made my decision based on how much pain I was in with my Endo and also by the fact that I had tried other contraceptions previously that didn't work for me. Whatever you decide is right for you, I wish you good luck x

Starlet76 profile image
Starlet76 in reply toBlue_30

Thanks for your reply Blue_30.

Maybe I should give it a try too. I have also been told to have a endometrial ablation which will help with the pain and reduce or even stop bleeding completely. It will mean though that I cannot have any more children 😔.

I have a daughter who is 13 in a few days...I know it would be a dream come true if she could have a brother or sister...and I DO want another little one but I don't know what to do. 😪

My body is saying enough but in my mind I do want more. My chances are slim and I'm suffering with pain that's affecting my day to day life. I had grade 4 endometriosis. Had it removed in Nov 2014. They also removed my left Fallopian tube as it was badly damaged. Since then my pain has been excruciating at times...especially during the night. It's on my bowels so I get a lot of IBS symptoms.

Mirena coil and ablation...what do you think? Has anyone had these done together? Has it helped at all?

Blue_30 profile image
Blue_30 in reply toStarlet76

I haven't heard of the endometrial ablation before. This sounds drastic as you sound as though you really would like more children. Perhaps on that basis it would be good to try the coil for a while? It lasts up to 5 years. If it helps keep the Endo in check it might help your chances of falling pregnant once you have it removed. Thats the good thing about the coil, if it doesn't suit you or you are ready to start trying for a baby it can be easily removed. I was told by my doctor that the effects of the Mirena leave your body pretty much immediately once it is removed so that would help when trying to become pregnant. However if you are curently trying to get pregnant you wouldn't be able to use this as it is birth control. I hope that that this helps you. Take Care x

Lottamac profile image
Lottamac

I had one fitted before being diagnosed and it did not suit me, it made me depressed and constantly felt like my body wanted rid, after having it removed I felt better in myself but did have emergency surgery on a large cyst. Not saying it was the coil as I had endo symptoms before but I can't help think it didn't help.

Starlet76 profile image
Starlet76 in reply toLottamac

Thank you

Mabes profile image
Mabes

I had mine fitted during a laparoscopy. Like Blue 30 mine was hellish at the beginning, but then around month 4.5 it really settled and from then on we (the Mirena & I) have gotten on okay.

The benefit for me is really reduced bleeding during my period in terms of flow and number of days. I still have endo pain, but I hope the little bit of progesterone is doing something endometriosis-wise to prevent rapid worsening.

I think if you had excision surgery and the Mirena fitted during it that is a good pairing as some of the adjustment happens while you are naturally feeling not great due to recovering from the operation. Also there would be the least endo due to the surgery so that probably helps as a starting point.

The ablation - a friend of mine who does not have endometriosis had it done and it worked for her. I do think you don't sound ready to have it as you are expressing doubts. Please don't feel forced into it.

Could you not be given excision surgery to deal with current endometriosis? If the Mirena worked for you then your bleeding might eventually be greatly reduced or stop even. However, if you are actively trying for a baby then it is not a good option due to its contraceptive nature.

Starlet76 profile image
Starlet76 in reply toMabes

Hi, thanks for you reply.

It does help to hear other people's experiences.

What do you mean by excision surgery? Is it to remove my endometriosis? Because I have had that done already in Nov 2014. The pain is worse now than before. I have it on my bowels too but they didn't remove it from there as they didn't want to risk any damage to the bowel.

I am thinking that maybe I might try the coil by itself...I will have to discuss the pros and cons of coil and ablation together with my specialist...she may think that that having both may be my best option.

Knowing how much I'm suffering, that is what is making me feel I need to stop trying for a baby even though I would really want another. My husband says maybe it's time to stop and he is happy with just my daughter. I am too but I don't feel complete...if you know what I mean. I don't want to have any regrets. I feel like I'm going to let my daughter down for not trying. I am 39 and there are people who are starting families in their 40's...so what if I have a 13 year old. People do talk. It makes me mad.

On top of everything we live with my in laws...culture and everything. It makes it very difficult to cope with the pain when people around you think you're just making it up sometimes to get out of doing housework or going to family functions. I've done it for 16 years! My husband is fed up too. Hopefully some day soon we can finally have our own home where we can 'just be'.

Let's see what happens xxx

persil profile image
persil

Hi I'm 43 had coil for 2years now did take time to settle down and I also have and I have top up micronor by low dose pop and its works its given me back my life in one sense. I have Grade 4 endo and bowel stuck down so lots of problems there but mirena has helpped In a good way. You decide but I would give it a try.

Good luck

Persil.

Starlet76 profile image
Starlet76 in reply topersil

Thank you... Seems we are nearly the same.

So, why do you have micronor as well and how has the coil helped to make your life better? X

persil profile image
persil

Hi starlet I asked my gp for the top up pop micronor at its lowest dose because the mirena takes time to settle down can be 6months and I couldn't take the pain bleeding and if I'm honest endo really ruined my bowel as its. Stuck down I suffer diarreah and have now been diagnosed with BAD which is very rare I had my gallbladder out and one year on just has terrible diarreah after 2years of Hosp tests they diagnosed this condition so I take awful medicine every day which I cannot live with out or I'm on the loo from 5am til 11am everyday. Endo plays a part in all sorts of things. I'm booked for a hystroscopy on the 14th sept but at the moment I don't feel upnto having the procedure as I have an awful lot of health issues to manage.

Anyhow it s probably worth you giving the coil a go and if its not for you you can have it removed. I had mind inserted awake and it was fine just spotting after and a tummy ache but my surgeon endo specialist fitted mine. Let me know how you get on.

Good luck

Persil xx

milli_fran profile image
milli_fran

Ive got the mirena fitted and never had an issue with it right from the beginning. I barely felt the insertion or anything either, I got up and was ready to leave as soon as it was in, the nurse said she couldn't believe it and was worried that I didn't want to sit down for a while!

The only thing I've had is every few months I feel pregnant, sore boobs, bloating and nausea, which lasts a few days then goes! Definitely bearable side effect though.

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