Mirena Coil - unbelievable pain?! - Endometriosis UK

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Mirena Coil - unbelievable pain?!

CS32 profile image
CS32
19 Replies

Hi All, I had the Mirena coil fitted 5 days ago which seemed to go fine until after 48hrs.. I have been experiencing the most horrific pain and ended up in hospital on Morphine. Tests and scans were inconclusive and I need to go back tomorrow but suspect coil has moved.

Did anyone else suffer with this? X

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CS32 profile image
CS32
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19 Replies
Seachel profile image
Seachel

My first and second were this way and pushed their way out. Give it a month, but don’t live with the pain. It’s too debilitating.

CS32 profile image
CS32 in reply toSeachel

Hi, thanks for your message. No meds are helping with the pain... I’ve just taken 500/30 cocodamol, x2 paracetamol and x2 ibuprofen. The pain feels like a stab and very sharp. How was the pain for you? It’s unbearable. x

Seachel profile image
Seachel in reply toCS32

Exactly that way. If you can’t handle the pain ask to have it removed. My last one wasn’t painful but was removed during emergency stage 4 endo surgery.

CS32 profile image
CS32 in reply toSeachel

Thank you. I am going back for scans today to check whether the coil has moved/embedded itself if all is fine, I’m going to have to get it taken out. The pain is too unbearable!! X

Linley profile image
Linley

My friend experienced the same as you-in her case it had moved so she asked for it to be taken out. Hope your pain eases soon, big hug🤗

CS32 profile image
CS32 in reply toLinley

Oh really. I think it’s deffo coil related as nothing is easing the pain. I was given morphine last night at hospital. The endo pain eased but the pelvic stabbing pain didn’t and it hasn’t at all 😥

I have a scan today. If it’s moved or penetrated I will be having it removed. I might have to think about going on a pill. Thanks so much for sharing your friends experience x

Supercover20 profile image
Supercover20

I had the coil a few years back, I felt ill the whole time and had to have it removed-I’ve not met anyone who has had a good experience x

CS32 profile image
CS32

That’s so sad. Yet all my consultant banged in about was how good the coil is. This has been the worst week of my life. I never thought pain could be worse than endo!! x

Christin_a profile image
Christin_a

Hello

Yes when I first had the coil the pain was so much worse than endo pain. They thought mine might have moved so I went for an ultrasound to check. It was still in place so it was then up to me if I kept it or not. I decided to give it a month, if it wasn't easing I'd then get it out. Bit it has settledand now 7/8months on I don't get a period and only get the odd twinges of pain, but it's nothing compared to the pain I had before the coil.

CS32 profile image
CS32

Thank you for sharing your experience with me. What did you use for pain management? The scan revealed that mine too is in the right cavity. However, my endometrium is 17.9mm thick which is concerning. It is irregular in shape too. Not really sure what to make of that. I’m now waiting an urgent referral. X

Aqua63 profile image
Aqua63

I had a Mirena placed and the pains were excruciating to the point that it was difficult to walk. I spent a lot of time in bed. It was depressing. I went to the hospital for a gyn procedure and had it removed. I felt so much better afterwards. My GYN didn’t believe that my pains were related to the Mirena and insisted, I tried it again. Silly me thinking that maybe she was right, I had another one placed. The second one was so painful and it came out. Right now I have the SKYLA Levonogestrel for 2 years and I have not had any problems with it. If you’re having so much pain, don’t wait to talk to your dr. Maybe you need something else, like I did. Hope you feel better soon!

CS32 profile image
CS32

Hello, thank you for your message. I had a gyn appointment yesterday who have insisted it’s nothing to do with the coil. I felt so deflated because I really thought the coil was inserted incorrectly. Like you, when the pain strikes, I can’t walk and am bent over in pain. I’m

On strong pain relief but even that isn’t covering me fully. ☹️ Just don’t know what to do. The dr at the gyn appointment yesterday thinks there’s more to the thickening of my endometrium 🤷🏼‍♀️ X

Lilyjack profile image
Lilyjack

I had a marina and it was the worst time of my life. The GP who removed it told me some bodies just reject the foreign body! She also said a lot of women with our conditions can have a sensitivity to progesterone which she suggested I did.

CS32 profile image
CS32 in reply toLilyjack

Thank you for your message. I just don’t know what to do. Feels so unfair right now x

Lilyjack profile image
Lilyjack in reply toCS32

Taking my coil out was the best thing I ever did. I gave it a fair go IMO (just under a year) but I also didn’t need to take morphine to control the pain. I do remember the settlement being hell and mine had moved when the Dr removed it which is why it had become so painful which could possibly be the case with yours. My sister however has endo also and had the marina for 8 years and loved it until the last 2 years when she started having issues (note she did then have a hysterectomy a year later at 38! But in the 3 years since has said it’s the best thing she ever done)

Somethings work for some and not others. I personally believe that all options should be explored before going under the knife and I’ve tried some truly awful treatments!

Just remember every body is different and you may find comfort in a treatment that I found horrific 🤞you find it soon

CS32 profile image
CS32 in reply toLilyjack

Thank you. I hope this settles or I’ll have it removed.. I did have a scan yesterday and it seemed to be positioned correctly. I’m keeping everything crossed! X

Polly7004 profile image
Polly7004 in reply toCS32

Hi was just wondering how you have got on now did you have mirena removed or did things settle. I had mine fitted because my uterus was 20mm thick and bleeding no stop r 6weeks had a biopsy and hystroscopy done the biopsy was clear of malignancy which was great news and they recommended mirena to keep uterus lining thin and help kick me into menopause as wasn’t producing enough progesterone. I was in light period pain till day 9 and now I have excruciating lower back pain spasms and left sided pelvic groin pain feels like labour pains naproxen and diazepam for muscle spasms don’t help so rang on call who gave me a day of tramadol phone consultation with ANP and Toledo see my doctor tomorrow but was wondering h you went on and if anyone else had these issues

Rulti profile image
Rulti

Hi, yes, I had a gyno insist I try the coil a few years back. After having it inserted I started cramping and I didn't even leave the hospital because I couldn't move. It was like some of my worst endo pain, but constant. They kept telling me that some cramping was normal and to wait for a while to see if it stopped. After 5 hours I was exhausted, and still paralyzed from pain. They ended up removing it there and then, and after a couple of hours my cramping stopped and I was able to go home. I couldn't drive though, so my other half had to come get me and we had to get someone to drive him back to the hospital to collect my car the next morning as I was still suffering from the after effects. I have since gone through childbirth, and the coil cramps were way worse.

Teedgar profile image
Teedgar

yes I did, it was excruciating and they refused to take the coil out and said I needed to wait. Anyway months down the line it had become embedded and then made it complicated to remove. Why is it they don’t listen to the patient half the time?

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