Mirena Coil : Hiya, almost 3 months ago I... - Endometriosis UK

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Mirena Coil

Hiya, almost 3 months ago I had the mirena coil put in during a lap. Ever since then ive been experiencing daily intense pain. Which has lead be me to take 500mg naproxen everyday plus occasionally other pain killers as well. I went to the gp a few days ago because the amount of pain killers I have taken over this time frame had become concerning to me, which is about 1 or 2 tablets every 4-6 hours. She said everything looked fine, didn't want to do an internal exam as I'm not nor ever been sexually active and that would have hurt. She ended up prescribing be 15mg codeine to take when the pain gets worse and said that it I shouldn't get it removed as it helps well with the endo pain. Can anyone offer any advice on what to do? I'm afraid of getting dependent on the pain killers but the pain gets so intense I can't stand up anymore and am left with no other option. Any advice is appreciated.

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Hello Joanna

The coil can help with endo pain, I'm in the process of getting an appointment to get one. But it can take 6 months for it to settle down. But it is up to you if you remove it or not. If you feel you are worse off with it than the endo pain then what does it matter that it can help with the endo pain.

You said your taking pain killers every 4 hours is that just the naproxen or something else like naproxen first thing then paracetamol 4 hours later etc? Just I'm on 500mg naproxen and the max dose is 1 to be taken twice a day. And if you are using it all the time definitely ask them for something to protect your stomach, there's a pill that can aid in protecting it aswell as eating every time you take naproxen/any nsaid like ibuprofen.

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Hello, thank you for replying, I take the naproxen with food every time I do. I had told my gp about how regularly I take it and she didn't even mention it. And that's just the naproxen although when it gets closer to the night time I tend to take 8mg co-codemol. The main reason I went was because of how many pills I was taking a day but I left feeling worse than I did before as now I had been prescribed stronger pain killers which defeats the purpose of my appointment. Before having the coil I was in intense pain for about two weeks each month in which one of the week's I couldn't get out of my bed. However with the coil I'm in intense pain everyday. And at least one day each week I'll have to cancel all plans because the pain is too much this past 3 days I haven't been able to get up of bed at all and I'm worry that the pains only going to get worse as it has been doing so far

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I have had the coil in for 10 months and it has been the most awful experience. I am bleeding every 2 weeks and have been in agony for months and have not been prescribed any painkillers. I have just had a pelvic MRI and waiting for results in 5 weeks as there are no earlier appointments.

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That sounds awful, I hope the MRI help you find what's wrong and that they will be able to help. I can't imagine having to deal with so much pain for 10 months. Although I have a lot of discharge and some spotting I haven't had an actual period just the pains of being on my period. I hope that the doctors will be able to help you and that you won't have to be in pain soon

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Thanks for the reply. I am bleeding for 5 to 7 days. So heavy, I am even bleeding straight through my clothes. Dr is thinking endo.

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Sounds awful. I was diagnosed with stage 3 Endo back in April. And the coil is supposed to work as a treatment for the endo. Hoping you have an answer soon.

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Good morning

I am sorry to hear that you are in so much pain and I completely understand your fears about painkillers.

I have always been afraid about getting addicted to them and am also scared of the side effects.

I used to take them regularly but I started throwing up blood last year and that was a wakeup call. Although I am still in a lot of pain, I will only take painkillers now as an absolute last resort.

It might be useful to ask your GP to refer you to a pain management course.

I attended one before Christmas. It was a 12 week course and it gave me a better understanding of pain and a range of techniques to manage it.

Good luck

A xx

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Thank you for replying, if you don't mind could you tell me what a pain management course is and how does it help?

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Of course. It covers topics such as causes of pain, sleep, relaxation techniques, delegating chores, boom and bust cycles, identifying pain triggers and depression amongst others.

The biggest plus for me was sharing experiences with the group and discovering my response to pain was in fact 'normal'.

Worth doing.

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Thank you so much for explaining it, I'll look into if I can get a referral to it.

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Good luck. x

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Hi Joanna can you get a referral to a gynaecologist? Sounds like if your doc is basically happy for you to be in pain or on loads of medication then you are not getting the care you need.

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I'm not sure my gynaecologist has referred me to a endometriosis clinic but I haven't heard back from them yet

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Sorry to hear you are going through this. I had a similar experience with Mirena and had it removed after 6 months. If you are going to stick it out for a while longer then definitely take something to help your stomach cope with the painkillers you are taking. For me, the bloating and daily pain was worse than my period pain/endo. I was having stabbing pains in one side (possibly cysts bursting apparently), weight gain, mood swings etc etc. Things did not improve over time so it was a relief to have it removed. I think other people have milder symptoms but if you are really struggling the removal is very easy. A lot of doctors seem to think Mirena is somehow symptomless but your GP shouldn't be telling you you cant have it removed if it is making your life worse - its your body so you really have to decide how long you want to give the Mirena. Good luck!

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Thank you for the advice, currently the pain does feel worse than the endo pain as it's every single day and leaves me feeling drained. With the endo pain it was 10 to 12 days a month we're I felt unable to do anything and was in severe pain.

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I think you should talk to a specialist rather than your GP! Honestly their reason for not examining you sounds strange and it is clear they are not listening to you. Can you call the doctor who gave you the lap and inserted the Mirena and ask for a follow-up? Maybe keep a diary so that you have a record of how bad the pain is (in case the doctor does not take your pain seriously).

I agree with the other answers here that say you need to be examined. It's important to make sure the Mirena is in place - it can move or your body can try to expel it, which can cause pain and other issues. If you haven't had children your uterus may respond differently than women who have given birth (expulsion is rare but less so if you haven't been pregnant). Even if the Mirena is in the ideal position, an endo specialist will give you a sense of all of your treatment options if Mirena is not working for you.

Definitely chase the referral up and see if they can give you a consultation soon as you are struggling. Unfortunately a big part of having endo can be advocating for yourself.

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Thank you so much for the advice I will try to contact the doctor and get a follow up appointment. I really appreciate all the advice. 😊

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I’m so sorry to hear the pain is so bad that you can’t stand up.

I think this is tricky because it does take 3 to 4 months for the marina coil to get settled which is what happened with mine although I didn’t have intense pain - I just had some pain and daily bleeding. I think on balance you’re correct to be worried about getting dependent on painkillers particularly codeine, although the other are less worrying (but do ask about stomach protection for the naproxen).

The doctor should have examined you internally in my opinion. If nothing else I think that you should expect a clear plan from the GP of when this pain should subside so to come back in two to four weeks for review. If the GP is not confident to do an internal they should refer you to somebody else who is. I hope you’re seeing a gynaecologist?

Love Cat x

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Thank you, I'm not currently seeing a gynecologist as I have been referred to an endometriosis clinic quite a while ago and am waiting to hear back from them

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Hi Joanna, Im sorry about the pain you're experiencing! I have been through it myself and it is horrible. What helped me out a lot was cramp bark amazon.com/Swanson-Full-Spe... black or blue cohosh and this wonderful device called livia mylivia.com/ which is essentially a tens machine! Alternatively ask your doctor about endep a nerve pain killer that is really effective. Best of luck!

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Thank you for the advice I Will look into if I can get anything similar 😊

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The pain could be due to endometriosis abd it could be a good idea to get a tvs done to check the coil is in the right place.mirena has only local action

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Thank you for responding, would that require a GP referral?

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I dont really know. Are you in uk or usa?

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UK

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I left uk a long time ago. So forgot.a uti is a possibilty too. Common after hospital stay

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It's okay thank you for the advice anyway 😊

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Youre welcome

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I had the marina coil for a month and the pain was terrible I had to get it out soon as possible it made my pain 10x worse sometimes it doesn't agree with us which it didn't with me I hope your pain subsides soon but if it doesn't I'd have it taken out I was told by gyne I should have waited 6 months but my GP said to get it out, soon as I did my pain subsided near enough straight away, I still have pain but nothing like that with the coil xx

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Sorry to hear that that happened to you.Thank you for the reply, My gp said to not have it taken out as it's supposed to help with the pain. However the pain currently is worse because of how it's an everyday thing rather then a few days once a month. It's the amount of pills that I take because of the pain is what concerns me the most. But my GP didnt really seem bothered by it and gave me a another prescription for stronger ones.

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I'm constantly on strong painkillers too two every 4 hours now as it's got worse but my Dr doesn't really want me on them but he said if nothing else is working I still have to have them I don't like them either and was also concerned about my liver, but gyne said I could try the back to back pill to see if that eases the pain until I have a lap and ablation I've been on them two weeks up to now with no improvement as yet still holding out hope the work, I hope you find something that works for you have you tried a tens machine or tiger balm I find they help a bit for me x

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Sounds horrible, hope you pain eases up soon. I've tried tiger balm and it did really help me at all although I haven't tried a tens machine as my gyne said it would probably only work if I went to have regular acupuncture treatments along with it which I currently can't afford to do

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Thanks, same for you hope it eases soon for you x

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Thank you 😊

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I had a the same - lap with Medina coil fitted at the same time. It did take over 3 months to settle down.

Beware though, it’s possible for your body to reject the coil like mine did after 6 months. This was accompanied by heavy bleeding. I would try and stick it out, but I think you’re right to flag up your pain. I was taking naproxen 500mg twice a day with stomach protector (landoprasol), topped up with cocodamol.

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My GP didn't seem concerned about the amount of pills I'm taking and didn't suggest taking anything to protect my stomach either. I'm currently taking a lot of pills most days ( pretty much everyday) should I make an other appointment to ask if they can prescribe me a stomach protector or are there any that are available over the counter? It's difficult to get an appointment at my surgery so if there an over the counter option that you would know of I would appreciate if you could tell me. Thank you for replying.

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I don’t think there are over the counter ones. I think you should try seeing a GP x

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Okay thank you for the advice, I'll try to get another GP appointment soon 😊

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I’ve tried the mirena and after a year i had it taken out due to the pain it was still causing and it made my hormone imbalance even worse. At times I felt like as if I had gotten sunburn cause I was sweating and cold at the oddest times such as being cold when outside in the florida summer heat. I’ve also tried other forms of birth control to help with the endo such as the nexplanon, nuvaring, depo shot (every 3 months) and then I no longer had insurance so for about 2yrs now I’ve not been on anything despite having endo. Heck my GYN didnt even tell me what stage of endo I have.

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Sounds awful, did you have a lap to diagnose your Endo? If so the stage should be in the discharge papers that's where it was for me at least. And hope you find a way to get help with the pain

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