Unsure about Mirena Coil - Am I over reac... - Endometriosis UK

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Unsure about Mirena Coil - Am I over reacting?

Squishybunny profile image
17 Replies

Hello Everyone,

Now I know this possibly comes across as a bit of a lazy post as I have already read a ton of posts about Mirena coil experiences, but I'm having a pain day and my anxiety is kicking me in the chest. *(crosses fingers for understanding)*

I'm going in for my first Lap next Wednesday, which is freaking me out but that isn't the subject of my post.

Okay, I took Dianette and then Marvalon from age 14 to 30. They kinda stopped working for me, as I was originally taking them to control my painful and heavy periods. In hind sight I think they stopped controlling everything because my Endo had started to get crazy.

I came off all hormones and started to feel wonderfully human again. I've always suffered with being quite down and easily upset, but weirdly all that crazy seemed to resolve itself and for the first time in over a decade I felt sane and had a libido that could maim a man if not kept in check...not going to lie, I really like feeling good.

So.. fast forward on a few years and my Endo decides to roundhouse my life.

While I was in the process of getting diagnosed my doctor recommended that I go back onto some form of hormone to help control my painful periods. She put me on a low dose progesterone only pill called Cerazette. I tried to stick it out for three months to see if I suited it, but the experience was horrific. I yelled at my Husband constantly, didn't want to be touched and generally descended into a dark malaise. I told my doctor I was quiting and she agreed under the circumstances.

So, further down the road I see my consultant and he recommends that I have a Mirena coil fitted on control my endo after I have my lap to unstick my innards. I refused, much to his confusion.

I shied away from the Mirena instantly, because it is yet another way of filling my body with fake hormones that have made me feel hellishly crap for so much of my life. I like my natural cycle and enjoy the highs, even if I have a few days of being a total cowbag with PMT. I do not want to give up my libido. My Mother had to have a hysterectomy at the age of 38 because her coil perforated her uterus.

I have done a lot of research on the web about the risk factor etc. and also read many personal experience stories, but as we all  know, the majority of people writing reviews are people who have had dreadful experiences and that drowns out the people who are muddling along fine or are having a wonderful time.      

So here I am asking you ladypeeps for your opinion or experience.

Am I being a total idiot? 

Am I putting myself at serious risk of my Endo coming back quickly if I don't have it?

Thank You for making it though another ramble of mine.

  

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17 Replies
Monikka29 profile image
Monikka29

I've had the coil for past 2 years and my experience is really good in general. My periods became much lighter, shorter and less painful (they still hurt to some extent but they are manageable). before the coil, I would bleed very heavily for 7 days sometimes and I would get headaches. The pain was so bad I would nearly pass out from it.

 I never had any spotting or bleeding with the coil, seems my body took very well to it. And never had any issues with libido. 

I can't tell you what to do, it is your decision. I find it changed my life for the better as I'm not as moody as I used to be and I don't snap at my husband and children.

Squishybunny profile image
Squishybunny in reply toMonikka29

Thank You for your reply.

I can assure you that I am too much of a stubborn baggage to not do what I thought best, hahaha.

Were you on the pill at all before you had your Mirena?

Monikka29 profile image
Monikka29 in reply toSquishybunny

Yes I have tried 3 pills in total, none of them helped with my periods, I would skip my periods sometimes as I was scared of the pain. I've tried the implant as well but I was bleeding on it constantly. Then my GP suggested the coil, I didn't want it to start with as I didn't like the fact that something was inside me the whole time but my periods were steadily getting worse and I thought I would give it a go and so far, so good, it worked. 

Squishybunny profile image
Squishybunny in reply toMonikka29

That's great.

Thank You for sharing.

I have to admit that the thought of having something in me all the time is quite odd.

Do you find it easy to check for the strings?

Monikka29 profile image
Monikka29 in reply toSquishybunny

My cervix is too far back for me to able to check for strings (that's what the nurse told me when I came for my follow up appointment) and I have never could really feel them - not very helpful! I had it checked by my GP a couple of times as I wasn't sure.

Squishybunny profile image
Squishybunny in reply toMonikka29

That's okay, everyone is different.

I'm also kind concerned that the strings might lasso my husband's member and end up with the darn thing being pulled out. 

I know that is a totally illogical thought, but it still floats around in the sea of other stupid thoughts, along with should I trim my lady garden before my surgery and I hope no one say anything mean about me when I am under anaesthetic.

Yes, I know I am kinda weird. 

Monikka29 profile image
Monikka29 in reply toSquishybunny

Hahaha I know what you mean - but just think that surgeons see naked bodies on a daily basis, some of them wrinkly or hairy or whatever so you shouldn't worry :)

Squishybunny profile image
Squishybunny in reply toMonikka29

True. I guess I have an over-active imagination.

Hi I don't think you will know how the mirena affects you until you try it. I've done it the other way round, had the mirena in after a big excision op for 18 months until I started to realise it was the cause of my mood swings (extreme) painful boobs, loss of libido and more. Who would want sex when your husband irritates you just for breathing! 

I tried a few months hormone free, enjoyed feeling normal again but the pain returned. So I'm currently trying cerazette and all those pesky symptoms are back but I'd say worse. 

I don't know how long I can stick it out for but my next gynae appt will be about further excision. 

I totally get you with the hormone thing 😏

Squishybunny profile image
Squishybunny in reply to

Thank You.

Yeah, it's an odd one sometimes, because I get the impression from the medical establishment that they'd like to fill me with hormones and send me on my way. My consultant seemed genuinely confused about why I would turn down the coil and kept trying to convince me. I know I am stubborn as all hell when someone tries to make me do something, but I do value my own hormones, for better or worse.

My Lap is a big excision op as well. I've got cysts and adhesions and Endo on my bladder and bowel as well as all the lady junk bits and bobs.

Do you mind me asking what you were taking, if anything before your excision (hormone-wise) and if that affected you at all? 

Prior to the excision op I tried a combined pill Marvelon for 3 months, it made me very nauseous and didn't help the pain.  They are trying to get me to try prostap injections to bring on chemical menopause but have resisted so far, things will have to be really bad pain wise to go down that route. If I can't bear the side effects of the pill God knows what prostap will do to me!

Squishybunny profile image
Squishybunny in reply to

Yeah, it does sound kinda hellish.

I know that there a lot of people who post regularly with questions about prostap.

How was your recovery from your last operation? Were you back up on your feet quickly?

Not too bad a recovery, pottered around house for first 2 weeks then built walking back up. Still needed a nap in the afternoon for a month though! Was pain free for a year after 😊

Squishybunny profile image
Squishybunny in reply to

That sounds good.

I have just finished my last day at work and am going in on Wednesday.

Fingers crossed that I stay pain free for as long as possible after the operation.

Did you surgeon comment about you only staying pain free for a years?

Oh good look for wed, no, the Drs haven't commented on why the pain has come back after only a year. But I have got an endometrioma back again so that could be causing more pain. 

Luck even 😊

Squishybunny profile image
Squishybunny in reply to

Thank you and don't worry. I speak fluent gibberish.

Sorry to hear that you don't have a solid diagnosis yet.

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