I had the mirena coil fitted 6 months ago. 10 days after the coil was fitted I contacted my GP complaining of severe shoulder pain. I am still in agony most days, and nights are the worst. I am getting by on anywhere between 0-3 hours sleep due to being so uncomfortable in pain. I have been prescribed naproxen, strong ibuprofen, strong cocodamol, amitryptyline, and have had 2 steroid injections 3 weeks apart into the shoulder. On top of that, around 2 months ago I started to get double vision and shadowing in my right eye. I am also still having this. I had MRI’s on my neck, shoulder and spine and there is physically nothing wrong with me, so the GP finally put the pain down to potentially being a reaction to the coil. She tried to remove it and couldn’t, I then had to rush to hospital as gynae said it shouldn’t stay inside me if I’m having shoulder pain and vision issues. 3 different doctors also tried to remove the coil unsuccessfully, with one dr pulling so hard with forceps he has actually removed the coil from the strings. To say the experience was traumatic is an understatement, the pain was by far worse than labouring both my children. I was told I’d be contacted within a couple of days to go back in and have an anaesthetic to remove the coil, but I am yet to hear anything and this was 3.5 weeks ago. Today I also had an MRI on my head for the vision issues, the results were sent straight to my gp, and I was contacted by a receptionist to book in an appt to discuss the findings and have a referral to ophthalmology. I am now terrified that I have something really wrong. I have done my own research into the mirena coil, and whilst it’s extremely rare, it’s not unheard of that the coil can cause intracranial pressure in the brain. I’m really hoping someone on here may know of something like this, or similar and guide me in the right direction. I am at my wits end, with 2 children under 2 who I feel completely incapable of looking after at the moment being in chronic pain with sight issues. Thanks so much
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Emily1107
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Hi Emily. I have no information I can offer you as my Marina experience was a very good one. But please get in touch with the hospital and ask what is happening about your appointment, don’t leave it, your health is too important.
I don’t know anything about Mirena other than my friend, who never ever had cramps, got on Mirena. She now has cramps, but her monthly is lighter than before.
I can tell you this with utter confidence: Re your statement “I was told I would be contacted within a couple of days to go back in to have an anesthetic to remove the coil but I have yet to hear anything and it’s been 3.5 weeks.”
Every office has priorities. Picking up the phone to call someone is their last. Dealing with people who come in. Answering doctors’ calls. Refill requests from pharmacies, Making appointments. Processing billing and insurance. Call them every single day!!! And I mean every day. This is an emergency to you, not them, being in awful pain must be terrible. Double vision? I’ve had it and it is disabling. If you can’t get ahold of someone, go in person to make an appointment. If they put you off, Well, we don’t have any openings for procedures that’s why we didn’t call yet. then insist you be referred out to someone with a shorter list. Put your name on a cancellation list. Call every day. Be polite, but firm. Maybe the person supposed to be calling is on vacation. Maybe your file was dropped somewhere if was paper. Maybe someone didn’t chart it correctly. Don’t beg or cry, you will be brushed off as an hysterical woman. Don’t yell, or you will be seen as an angry lunatic. Simply tell them this is an unacceptable standard of care, you have been waiting for far longer than you were told, and this needs to be taken care of.
If you feel your concerns are being dismissed, not listened to, or if you are a more timid person, I know it’s awful, but you need to bring a man with you. Father, brother, cousin, flatmate. “I’m worried about her.” The medical world can be very chauvanistic, even women. Some people may disagree with me, and no, it isn’t right, but it still exists.
Just to update - I am still yet to hear anything from the hospital regarding the removal of the coil. I have managed to speak to my consultants secretary who promised to call me back that day (Thursday just gone) and still nothing yet. After a couple of horrendous nights, I took it upon myself to actually go to A&E this morning. My vision has now got a black spot in my right eye and the pain in my shoulder is unbearable, even with the meds I’ve been prescribed. I was treated awfully at the hospital today - I was called into see the triage nurse, explained the situation and history, whilst in tears. A consultant then came in and basically said I was wasting their time and I should go home, I needed to take it up with my consultant and she wouldn’t be treating me today.
So I have been at home feeling unbelievably defeated today. I’m still not sure what else I can do from here, I am calling gynae every day and my GP.
UPDATE - I organised to see an optometrist today, who actually just sent me to A&E, where I had some scans done on my eyes for the double vision. They have confirmed I have intracranial hypertension - which they also think could be linked to the coil. They have now sent an urgent letter to the gynaecology ward asking for me to have this removed asap. If removal doesn’t help my symptoms, then I’ll have to have a lumbar puncture.
Oh my goodness this sounds absolutely awful. I'm sorry that you have had to go through all this.
This is honestly my worst nightmare about getting the coil. I have already had a consultant prescribe me an HRT that they shouldn't have because I am a migraine sufferer and this caused a mini stroke 😑.
I honestly really hope that you get the proper help and support that you deserve. Get well soon. ♥️ x
UPDATE: I was finally brought in for a general anaesthetic and a hysteroscopy. I was in theatre for a total of 2 hours and they were unable to locate the coil. I am now terrified that it is stuck in one of my tubes/embedded into the wall of the womb as I know neither of these scenarios are good at all.
They are now finally seeing me as an emergency and I am going straight in for an MRI scan this evening to try and locate the coil.
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