Mirena Coil - should I get one fitted

[magskate]

I was diagnosed with endo 5 years ago but have subsequently had 2 IVF babies. Pregnancy and breast feeding seems to have kept the endo at bay, but has now come back with a vengeance. I have a scan with my gyny consultant tomorrow. He suggested fitting a Mirena coil at the same time as this should ease some of my symptoms. He has also suggested I could have a laparascopy to laser the endo and try and detach my ovary from my abdominal wall. I think I have decided to go for the laparascpoy as my right ovary is particularly painful, but understand that the endo is likely to come back if I do not use some form of hormonal treatment. I am very nervous of the coil though as have heard some horror stories. I did not respond well to the pill as got very down and my labido was non existent. I have heard some people suffering the same from the Mirena Coil and was wondering if people could share their experiences.

Thank you

[silversun]

Hi Magskate

I had the mirena coil fitted in January to treat adenomyosis which is endometriosis inside the womb. I waited a year after the initial diagnosis to have the coil fitted as I was also very worried about the side affects. I also have menstrual migraines and had tried the progestrone pill Cerazette to treat this a few years before. It made me depressed and very tired.

Initially after fitting the coil I had abdominal and back pain. This came back three times over three months, the third time being the worst which is when I wrote a question here asking if other women had experienced this. Since then it seems to have settled down ( I've had it for nearly six months) and I've had no back pain since. I think I do have days when I am a bit more negative than usual or bad tempered ( I read online that many women have increased pre menstrual symptoms on the coil) I am also tired BUT I am surprised that it isn't as bad as I thought it would be and I have only had two weeks of bleeding in six months. I don't miss my periods as this is when my symptoms were at their worst and I can, at the moment, put up with the mild side affects that I have. I would suggest trying it, ideally keep it in for six months if you can but make sure whoever fits it agrees to take it out on your request whenever you may need that done. They can't refuse although I have read here that some health professionals do insist you keep it in for six months.

Best wishes

[magskate in reply to silversun]

thank you for sharing your experiences Think I will definitely give it a go, but have it fitted during my laparascopy as suggested by 'impatient' below. Has really helped getting some feedback on here as although have tried to talk it through with my family they simply don't understand what I am going through and just say 'it's up to you', which fundamentally it is but doesn't really help much!!!

[Impatient]

Well worth trying s it could just traansform your life for the better and that is worth a few months waiting till it kicks in to working.

However

(1) don't have it put in yet, get it put in when you have your lap op, as it does hurt or at least is very uncomfy when it is put in, so get it put in properly while you don't know aanything about it, with a general anaesthetic

(2) it is much better to have surgery for endo and not be on BC pills or mirena etc, because active endo can be spotted so much easier than endo which is not bleeding or hasn't bled recently because you are on meds to stop the bleeding.

So on both counts, I would advise opting for the insertion of the coil while you are out of it.

Once it is in, it needs 4-6 months to build up lyers of goop around it to keep it in place and to stop your periods or at least cut them right back to spotting. So during that time you might want to consider taking some other BC pill or norethisterone to stop too many painful periods while you wait for the mirena to get fully working.

It will be working right away, but you won't notice the best side effect of stopping periods for while.

Certanly worth trying it though. There are a few niggles with it for most ldies but nothing on the pain scale and distress scle of a painful endo period. You will be liberated if it works for you, much better able to cope with the kids and their activities if you are not having to worry about coming on, how much you will hurt, how much you will bleed plus all the expenses and hassle of pain relief and tampons and towels etc. It will save you a fortune in money terms alone, so I would definitely recommend at least trying it.

If it really doesn't suit you and you experience side effects which are worse than having periods then it can be taken out.

[magskate in reply to Impatient]

thank you so much for your advise, especially with regards to the surgeon not being able to see the endo so well when coil is already fitted. Makes perfect sense when put like that. Will definitely suggest this course of action with my consultant.

Thanks again

[ClairL2001 in reply to Impatient]

Hi

Sorry to gatecrash your question magskate (may also help you in the long run) but impatient you mention the "layers of gloop" that need to form for the first few months - do you think it is this that is giving off a wiffy smell? I am mortified as, even though i have no discharge, when i have been to the loo or when i do squats (exercise) i get this pungent smell. It is making me paranoid and i am just about to start a new relationship... Will this pass? Is it a normal side effect? Is it an infection?

When i do my monthly checks to make sure the strings are still there (mine don't hang they're lying up against my womb) the secretion has the same smell... Uggh.

Help please?

[worth71]

What the ladies say is very good advice, i will say that if you've experienced giving birth naturally then having it inserted won't really hurt, mine was put in whilst i was having a hytserocopy with no pain relief at all, i didnt know i would be having it done it was suggested whilst they were doing the hysterocopy, and they said that if biopsy results came back normal then this would be the only treatment offered. this was two years ago, back when they didn't really believe i had the symptoms i had, they also said i would need it fitting at the hospital due to tilted womb, and the thought of having to have another appointment so i just went for it there and then which is unlike me as i like to research stuff first, and i just had a little cramping whilst it was being put in, they told me to take norethisterone for the next month as they said i was due a heavy bleed and that it may fall out with that.

the first six weeks or so were absolutely awful though, the pain was unreal, i could barely stand up straight, couldn't work very much. as time went on the bleeding did reduce in heaviness but it was almost everyday ranging from spotting to quite heavy. the days i wasn't bleeding i had this weird gloopy stuff (now explained by impatient but at the time i did not know it did that) but yes weird gloopy discharge. after a year of it being in all that had improved was the flow of bleeding and my moods had levelled out nicely, no more rage lol. all the pain was the same, worse sometimes, i was still having quite a heavy period for about 10 days, then about 10 days break and then back on again, it never really settled into a pattern, i could never predict anything with it, but i knew i was bleeding a lot more than what i should've been with it. when on period i would have several hours a day of contractions, real contractions the same as when in late stage labour, i would crawl the floor just like the real thing, it was quite exhausting. i also had some hair loss too. so it was agreed after one year that they would remove it and do an ablation, that was last july, i finally got my ablation in march this year, so it was left in all that time, i also had my lap at same time and was sterilised too. the mirena didnt really improve in all that time either but i think i gave it a fair go leaving it in for 21 months in total. at my lap they diagnosed severe endo with ovaries stuck to each other and to bowel, bowel stuck to womb and pretty much everything in pelvis is stuck together, so much for imagining the pain lol, they've put me on the waiting list for a full hysterectomy but thats a whole other story lol.

since my mirena has been removed i no longer get the proper contraction pains, so far anyway, its been 3 months since it was removed and the ablation, i cannot work out if the ablation has worked as i bled for the first 7-8 wks pretty much, and i seem to have about five days bleed every other week at the moment, but its manageable, no endo pain improved as they didnt remove any, but i know mirena did not help my endo pain at all, it made it worse.

having said all that, i would still say give it a go, as each and everyone of us is different, i'm still glad i gave it a go, for some women it does truly work miracles, make sure, like impartient says, you give it at least six months, as you wont know any sooner that if it will help or not, and your body may go through all sorts of different changes along the way. and i hope my telling of this experience hasnt put you off, or that anybody thinks i am trying to put anyone off, this is just my experience of it, but i still would say give it a go, i will try anything rather than go down the surgery route.

good luck with what you decide xx

[gypsydarla]

I had the mirena fitted 4 years ago and I'm about to have it removed when they perform an ablation as it was deemed not to have worked for me.

Saying all that I can say it did work for 2 years in my opinion but then things definitely started to return slowly. I didn't suffer at all when it was put in. Despite being told it wouldn't hurt the doctor and nurse seemed shocked I'd felt very little and wasn't in any discomfort so I assume it hurts most people. I did have bleeding to deal with and the first night I felt really down - I do suffer with depression and things, but the 2nd day it had gone and I have never had issues with it in that way. The first 6 mths or so weren't great and I did go to see my GP to see about having it removed but she convinced me to give it the full 6 mths before getting it taken out and things did eventually settle down.

It virtually stopped my periods for the 2 years, all my pain disappeared and I actually managed to lose weight very easily. It never affected my labido and generally I was pleased with it till things changed again. I would recommend ppl give it a go but would say to be prepared for 6-8 mths of things not being any better and wanting to give up on it all. It's not a quick fix answer but it can give some relief for a few years.

xx