Bad Mirena Experience: Hey ladies, I've... - Endometriosis UK

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Bad Mirena Experience

rainbowsparkles profile image
17 Replies

Hey ladies,

I've been driving myself crazy the last few months as I don't really have anybody to talk to about endo. I really need to hear from people experiencing this. My boyfriend tries his best to understand and my mum feels helpless.

I was wondering if anybody else has had a negative experience with Mirena. It was pitched to me as a miracle and it would be the end of my endo problems but I've only suffered. I get sharp prick-like stabbing pains since getting it and no less pain. I also feel severely low in myself. I get depressed, I've lost interest in things I loved doing and my whole family has noticed I've changed emotionally. None of the consultants took me seriously apart from 1 and that was because his wife had the exact same experience with the Mirena Coil. He offered to take it out a few months ago but I left it in to trial as it's a huge struggle to get it inside of me due to angles etc so it's not as simple as "in and out" I have an appointment on 28th and it will have been a year since my surgery and since getting the coil. I wanted to make sure I'm making the right choice getting it removed?? I really would love to hear back. It would make me feel much better about all this.

Thank you for reading this far xxx

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rainbowsparkles
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17 Replies

I've just had mine removed this morning under general anaesthetic because it caused bleeding & spotting throughout the month and emotionally I was in a bad way.

I felt angry, irritated by really small things, really low and very tearful. I'm so glad I've had it removed because recently I'd started to have really dark thoughts. I've never felt this way emotionally before so I'm very pleased it's gone. I can only think these were side effects of the Mirena. Time will tell. I gave mine 8 months to settle but I'm so pleased it's over xx

rainbowsparkles profile image
rainbowsparkles in reply to

Thank you so much for replying. This is exactly what I go through. How did you get it taken out? Did you just tell your consultant. Also, why did you need it removed under general anaesthetic? I needed mine inserted with general anaesthetic so will I need that to remove it? Xx

in reply to rainbowsparkles

After the initial six months when I was still bleeding and spotting throughout the month I asked for it to be removed. My GP tried at her surgery but couldn't remove it so I saw my Gynaecologist and he also tried but I was in too much discomfort (I have endometriomas on both ovaries and possibly that was causing the pain). So today he removed it for me under general anaesthetic. If you manage internal examinations, smears ok you should be fine to have it removed without anaesthetic. Are you usually ok with those? Xx

rainbowsparkles profile image
rainbowsparkles in reply to

They can be quite painful for me to be honest, and the reason they struggled at first is because my cervix was smaller than the actual coil. The woman who first tried said even if she forced it in, i'd be in agony, but then the consultant before my lap said "don't worry we'll get it in" so i'm really scared considering how contradictory that was. The first woman tried for absolutely ages bless her. Makes me wonder how rough they were with it while i was under.. :| I'm really really hoping they can just take it out there and then! xx

in reply to rainbowsparkles

I think they'll try while you're awake, because if the strings are visible and you're not in pain or discomfort it will be a very quick thing to remove it. But if you struggle don't worry because I'm sure they'll go a general like they have with me. You may need to explain how you're feeling emotionally and say you'll really struggle to wait much longer xx

rainbowsparkles profile image
rainbowsparkles in reply to

Yeah I'll just stress to them that I'm more than willing to go through 10 mins of discomfort for the benefit I'll get from it!! Hopefully they'll be kind and listen. My experience always depends on the consultant I meet with that day! xx

Bexstar74 profile image
Bexstar74

I was bulldozed into having a Merina at the time of surgery diagnosis and it was the worst thing. The consultant I was seeing then just completely overruled me. Needless to say after 12 months of agony, I had to have it removed.....once they located it as it went AWOL. I had to have a local anaesthetic in my cervix to retrieve it which was not pleasant but immediately after it was removed my body felt different, in a good way. I was so relieved and pleased to get it out. There are other treatment options available which are worth trying instead so trust your instinct. You can always decide later on to give it another try. xx

rainbowsparkles profile image
rainbowsparkles in reply to Bexstar74

This happened to me!!! I was pretty much told it was my last resort. Did they remove it straight away after you told them you wanted it out? How long did it take them to find it? Did you have any signs it had gone AWOL? Xx

Bexstar74 profile image
Bexstar74 in reply to Bexstar74

It's the first thing they like you to try, not the last, so have you tried other options yet? They took it out within a week. Took about 10 minutes to find it and get it out. I had incredible heavy pressure on my uterus/cervix when sitting, sharp stabbing pains when sitting down, the pressure was so intense I couldn't wear tampons. I couldn't walk properly most days and the bleeding was absolutely horrific. I flooded towels within 20 mins most days especially so when I was carrying light bags of shopping and walking.xx

rainbowsparkles profile image
rainbowsparkles in reply to Bexstar74

I tried most things first because they really struggled getting the coil in at first and they caused me to bleed trying so I was reluctant. I only got it when I got my Lap because I wouldn't be awake to feel it again. I'm really really excited to get it out. I'm really struggling. Your experience sounds awful :( xx

Bexstar74 profile image
Bexstar74 in reply to rainbowsparkles

Have you tried prostrap injections yet?

rainbowsparkles profile image
rainbowsparkles in reply to Bexstar74

It yet but I'm going to look into that xx

Zo511 profile image
Zo511

I had mine removed in December.

I was pushed into having it because I'd been on the pill for 5 years and they thought it might help. I was 20 at the time and had it for two and a help year. At the end of the second year it slipped or moved or I needed it to be replaced, because suddenly I was in a lot of pain again. The weirdest part was, I was getting the bad period pain every month but no blood.

Anyway fast forward to December, I finally begged to have it out as it clearly was doing what it was meant to be doing! And I was starting to bleed during sex.

I'm really glad I had it out, it took until a month ago for the bleeding to stop. I'm back on the pill and just take it without breaks until I can take a week off and have a period.

I was lucky not to have any mood swings, but I know a lot of people who have suffered the same. Personally, I think getting it out sounds like the right decision.

Good luck x

littlebrownbird profile image
littlebrownbird

It worked for me but getting it in s painful for me as my womb is tilted and it takes a kind and skilled consultant to insert it.

Do what feels right for you. When it works you don't feel it. I get the odd twinge bit otherwise ok. It's your body so do what you feel is best for you x

Jenaust1985 profile image
Jenaust1985

Hi,

I had a marina fitted 8 months ago as this was sold to me to as a miracle cure and was told that I had to try this first before I could get a referral to the hospital.

Long story short is that it hasnt worked for me, constantley in chronic pain- not sure if its the coil or not.

The threds have vanished but had a scan and it is where it should be. No one is willing to remove it atm, even though Ive begged 😢

Hope u get it out soon and start feeling better soon x x x

Lithofairy profile image
Lithofairy

I am so sorry you had such a bad experience but I can totally relate. I had mine for 4 months with constant pain the entire time- severe, sharp and stabbing with no warning on top of a constant, dull ache 24/7. Also extreme fatigue, crazy mood swings, anxiety, insomnia. I went to my doc yesterday armed with every reason to take it out, plus I said the strings seem longer and I wonder if it's out of place. Well, it WAS! I was 100% right. The stabbing pains this whole time were my uterus working to get the thing out and expel it. A lucky 15% of cases (I was so glad it didn't attach to or perforate anything- ladies, so sorry to those of you who needed surgery to remove it). So I didn't even have to question the decision to get it out and the doc couldn't deny it anymore. I truly can't wait to get my life back. I know there is a 'crash' for a while but then I think things will level off.

Also, I sympathize to all of you who had it pushed on you so hard- same here. After multiple laparoscopies, the last doc, one of the TOP in the USA insisted I needed Mirena for my extra bad periods. I didn't want it 7 years ago, I didn't want it during that surgery this past Fall. But I still had rough periods 3 months out and needed to go back to work in January. My local doc was pushing it on me too for that reason so I finally caved. Worst decision ever! I needed to listen to my gut instinct. I'm trying super clean anti-inflammatory eating (no gluten/wheat, dairy, sugar or soy, etc), plus supplements, meditation and working up to more exercise as I can. I HOPE this helps to detox and improve future periods. There is nothing else to do.

Starry profile image
Starry

It's a Marmite solution for some people it really works well, others not at all. I was told before mine it only works in 60% odd cases. It like most hormone treatments can take several months to settle in hormonally and also with the coil physically. The Patient leaflet makes it clear its your right to have it removed any time. My GP offered me a local because I was worried due to my cervix pain post op. I felt like death warmed up and bled heavily non stop for 5 weeks then my periods swtiched off like a tap. But a year is more than enough for you to decide if it works for you.

All I would say is I hated mine and had Agreed to change to zoladex but have found zoladex far far more horrific by way of side effects so in the end cancelled my coil extraction. Of the two though I dislike it it is the lesser evil. I can't wait to finish my 3 rd cycle of zoladex so I can refuse to have any more.

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