Endometriosis UK
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Mirena coil - Help!

About 4 months ago I had an op to remove endometriosis and cysts on the ovaries.. 3 months ago I had the mirena coil fitted and I am in absolute agony :( I just want the pain to go away! Last month I had the worst stabbing pain in my stomach that I had ever had ( my sister took me to hospital with what we thought may be an appendicitis) they discharged me with tablets which didn't work but after 2 days the pain slowly subsided as I came on. My back pain has become increasingly worse and my lower back is right and full of knots :(

I'm still getting the occasional stabbing pains in my belly and severe cramping . Everyone says to pereservere with it but it's really getting me down :(

I try to put on a brave face because everyone is tired of me moaning but I am in agony 90% of the time and I'm told to 'get on with it'

Please somebody shed some light as I really want to get it removed but scared about my endo coming back too . I feel like I'm stuck in between a rock and a hard place.

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I understand your pain and had the coil removed 3 months ago after a year. Sadly there is no crystal ball to say if it agrees with you or not. My pain did ease over time on the coil but admit it did escalate every time I was coming on. I was convinced at one point the thing was burrowing out! Sadly when you have it removed you have the question of what to do now!!! My consultant gave me Zoladex and I’m having problems with that as well. I’ve just spent day 2 in bed with the pain & I’m anxious about injection 3 but my hubby advised me to stick at it as what else have I got to go to 😖

Good Luck Grace

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Bless you Grace! I managed 6mths with the Mirena, I’d promised my surgeon that I would give it a chance and to give it 6mths. He had put it in during surgery to remove Endometriosis. Once the 6mths was up, I was straight down to my GP surgery to get it removed! The nurse removing it couldn’t find it 🙈 it took a Doctor about 20 minutes to locate it hidden behind a massive blood clot! Like you, I had horrific pain, and I bled constantly. A month after removal, I got pregnant! After pregnancy, endo reared it’s ugly head again, I’ve finally been referred to a BGSE centre and an endo specialist, he seems to have a clear treatment plan for me, finally! So all I can say is, maybe be give it a little longer but at the end of the day, you know you’re own body, if your feeling is to get the thing removed then do it. Then try something else.xx

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How did your treatment plan go ? :) I've just had the coil removed as I couldn't bare it anymore lol! Xxx

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Awww bless you! So I’m at the end of a six month course of Prostap injections - these have worked a treat for me! Yes I’ve had some menopause side effects but overall my pain has eased. I’m just waiting for a date for surgery for removal of any Endo they can see and to remove a cyst from my right ovary. What’s your next step?xx

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Hi Grace, have you got a temperature? I had a massive infection with the mirena which left me in horrendous pain and ended up in me having two surgeries- one major. I only had mine 10 days, but like you it was for Endo treatment. I’m now back on the pill, 3 packs at a time, as I have been given no other options of treatment. I have stage IV endo and I’m 44, so I kind of can’t wait for menopause. My surgeon said my insides are a mess and all stuck together.

Don’t just put on a brave face- if it’s causing you that much pain go back and don’t take no for an answer. It’s your body. Endo will come back a bit every time you have a period (as I’ve been led to believe), so reducing your periods or having none (which the mirena can do) is how it’s treated. If any one knows anything different please tell me!!

I have friends with mirena and most just sail through it no probs.

I don’t even get on with the pill very well but it seems like my only option.

Hope you get it sorted.

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Hey, which pill are you back on now? Tried Micronor then Zelletta and Cerazzette.. they all stopped working or side effects like sleepy and dizzy all the time and puffy eyes were worst than the endo. My pain is actually bearable but my face looks a mess, I look so tired like Im 45.. I need this hormones to stop my periods completely but scared of the coil.

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Grace, get it removed, doctors keep telling us what to do but they are not going through this themselves.. Youll just need to fnd a new pill that will do the same job? Im looking for one.. Loestrin worked perfectly but unfortunately Im over 35 so cannot take it apparently..

Micronor/Noriday worked well for a bit..

zelletta and Cerazette makes me tired and sleepy..

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Hi, I think you’re right that with endo we are stuck between a rock and a hard place. In my experience none of the treatments are easy or straightforward.

I too had pain with the Mirena at first, like you say, worse than before. I stuck it out and it gradually got better until my pain went away altogether for many years. I think what helped me get through those early days was the feeling that it had started to settle (at about 3m). Once the pain was beginning to fade just a little, I could persist more easily. But if this hasn’t happened to you, then I understand you wanting it out. Unfortunately it just doesn’t seem to settle for some women.

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I've had it taken out now but I'm experiencing heavy bleeding all of a sudden ? I wonder if that's a side effect ? .

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I believe that’s quite common after it’s removed, but if it persists it might be wise to get medical advice.

I hope you feel better soon.

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