Severe pain with the Mirena settling? - Endometriosis UK

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Severe pain with the Mirena settling?

Andy2019
Andy2019

Hi guys, I just wanted to ask about if anyone after fitting the Mirena coil had severe bouts of sharp pain? This is after 2 months of it being fitted by the way. It literally is severely painful, shooting sharp knife pain through my uterus and backside and lasts in short bouts for hours on end. I don’t know what to do because I’m being advised to just wait a few months longer and it should get better/improve my endo and adeno symptoms (recently had a laparoscopy and hystereoscopy to treat the endo) but on the other hand this pain is crippling when it does hit. Has anyone else had an experience like this? What did you do? Does it get better?

17 Replies
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I had crippling pain from it and nearly passed out. I waited nearly 3 mths and then got it removed as I couldn't take the pain, was bleeding most days and it was effecting my mental health by then. You know your body and what you can bear. I feel like it's a Marmite thing, you love it or hate it. My body just couldn't deal with it and I really felt a lot better with it out.

Good on your for listening to your body, I stupidly listened to my stupid surgeon who told me to keep trying it for 7 months before I demanded it be taken out. I understand it's a godsend for people who it suits, but if it doesnt, your life turns to pure hell.

Yeah I’m also having spotting and bleeding with it, some day’s it’s fine then there’s several days and hours where it’s not! Super frustrating, feels like actual torture. Thanks for your reply x

Hi, I can completely relate.l. I put my body through this 'try out the mirena' pain, to see if the mirena suited me for 7 months, before I demanded it be removed out. Even then my surgeon questioned me if I really meant it!! My entire pelvis basically froze and I could only walk around like a duck with my bum out when I had the mirena in, and when all down hill after I got mirena removed after 7 months as the endo pains rocketed and my endo had grown back like a bush as my surgeon had diathermy / burnt off my endo, which is like giving endo fertilizer. Sure enough it had grown back like a bush.

Advise from my excellent surgeon when I changed surgeons years later: you should only try the mirena out for 3 months to see if it suits you. If it still doesnt suit by 3 months, take it out. Sometimes apparently it does settle down for some people, but I reckon that's for older ladies who have larger stretches uteruses anyway.

As a solution, my new great gynecologist suggested me try out the Jaydess, which is like a mini mirena, and suits younger ladies, who haven't had children or stretched uteruses etc. It was sore for a few weeks after the surgery when I had it put in, and bingo, it's been really good with no horrible horrible horrible horrible mirena pains. I didnt have to experience bad 'try out the mirena to see if it suits' pains with my jaydess. But overall, I've had a jaydess in for 1.5 years and I've been able to live a normal life and walk normally and exercise.

Honestly I feel your pains 100%, I can relate. Dont risk trying the mirena for too much longer even if the dr wants you to. They cant feel the pain. I actually think my mirena cut through my uterus, it was basically dangerous pain feelings. I went disabled from it really.

Plus consider getting a better gynecologist who specialises in endo if they dont believe or suggest you have it taken out by 3 months of it NOT suiting you.

Your body is trying to reject the mirena, and your uterus is having contractions etc, which is why you do not suit it and are getting terrible pains.

How it works, it a flem like substance needs to its time to build up in your uterus to hold it there. As it thickens the lining of your uterus walls and holds the mirena /jaydess in place, so in that sense you need to have it a few weeks /months to thicken.

Hope this helps, and take a long soak in a spa bath to try relax your angry uterus.!!

Thankyou so much for this information, I really thought that I was just being a wimp and to just suck it up but still the pain can be intolerable and feels like actual torture. If you mind me asking, where is your surgeon based? Or if you could privately message me the details of your surgeon cause he sounds like an absolute gem.

I’ve been seeing mine since august (BSGE Accredited) and he’s a lovely guy just I feel that he’s adamant that the coil will help and that my endo won’t grow back. He too used laser surgery when I preferably wanted excision, however I didn’t have much choice as my bleeding and clotting was getting way out of hand in December. So I just had to make do for the meanwhile.

And I’m surprised that I’ve never heard of the mini Mirena - I’m 26 never had kids so I definitely would have been interested in a less invasive option. It does feel like my uterus is wanting to throw out the coil cause the contractions are insane - I’m calling them labour pains because they are that severe.

The best surgeon I can recommend is Dr Tamer Seckin, based in New York. Never been to him, but he's one the the best in the world. Google his website and read his book: the dr will see you now. These 2 sources of information informed me more about my surgeries than any surgeon of mine combined. Or message his offices and ask who is a very trusted surgeon who practices gold standards of surgery for in your area. My new surgeon has been good but isn't in UK sorry! The jaydess is definitely newer than the mirena, and I'd say only surgeons who keep up with the play would be on the know about the latest and greatest.

I didnt have clotting so j cant comment on that.

Same, I'm pretty sure I'd be good at popping out a kid if I've been through constant labour pains for months on end, and others have a baby in a few hours!

If you're going to get the mirena out at any stage, awake, it does hurt like hell, I'm not going to sugar coat it, esp as we've never had kids. So take stronger pain killers than usual, before and after. So they have time to work. Otherwise, get your new surgeon to do all this, and not leave it for your old Surgeon. Could consider getting knocked out if you dont want to feel any pain at the time. I wish I did this. I'm sure mine had perforated my uterus, so I'm not sure if this was the reason removing my mirena was sorer?? I cant believe I went back to work after mine was removed!!😅very sore.

Let me know where you're at in 1 months time.

I also want to add, the jaydess is a million times better for my body than the mirena. However, I'm scared I chalked up the jaydess to much. The jaydes doesnt give me crazy mirena like contraction pains anymore. However every now and again, I do wonder if its slipped slightly or slightly pocking into me, making me a bit uncomfortable sometimes, on a very low low pain level, then it may fix itself up again?? Or the mild pain stops, and this has nothing to do with the time of the month. It stops my periods, which is amazing. It's ok, but I'm not going to have it long term. So far had it for 1.5 years. But ideally I'd have nothing, personally. But yes, I have a love hate relations ship with these IUD's.

I’d rather a mild pain than this Mirena coil pain - it’s too severe and unbearable at times! I mean I’d rather no pain at all but if I had to choose between the two. I’m glad you brought up the Jaydess as honestly I’d have been none the wiser on what IUD options there are or that options even existed?! You’re simply offered one option and that’s that!

I had these pains for about 6 months until it settled? And then it really calmed down and the minera was genuinely a godsend in terms of the endo...so was worth the 6 months of settling in pain. It was really tough though and those pains just don't feel worth it as they're as bad as endo pains!!

Hope it gets better soon xx

Andy2019
Andy2019 in reply to BonitaBB

I’m glad that it’s helped you! I’m going to play it by ear and I’m trying to be patient but lord, this pain is super testing. It’s nice though to hear there is a light at the end of the tunnel. Thanks for your reply x

Was it fitted by an endometriosis specialist? Nurse? thing is normal gynaecologist ,g.p etc may have no indication where to put it without discomfort you may have nodules and things sitting up their only an experienced person would know where to place it

Andy2019
Andy2019 in reply to Afrohair

I’ve had it fitted by an endometriosis specialist - he was the one that finally diagnosed me with both adenomyosis and endo. It’s just the settling of it is crazy, the pain I’m getting is on another level and no pain killer is helping :( but thanks for you reply x

Afrohair
Afrohair in reply to Andy2019

Ok I’m so sorry you are suffering x

Hi Andy2019

Yes I had exactly the same thing! It felt like what I imagine contractions feel like! These bad bouts did settle but pain remained, after 5 months I had mine removed as I couldn’t tolerate that and other symptoms!

I just wanted to add more that I've learnt with this, the mirena (or jaydess) blocks out some pelvic pain, only locally, meaning it's only effecting the hormone sensors down in the pelvic area, and it does not effect your overall body's hormones. So normally overall your body has too much estrogen and not enough progesterone hormones, if you're getting endo pains etc. Also, an IUD like Mirena and jaydess can disguise any endometriosis pains if its grown back. When a mirena is removed, it means that synthetic hormone has stopped being fed to your local pelvic hormone receptors, and you begin to feel the pains of having a body that is overall low in progesterone and high in estrogen, so you are sore and get sorer, also in this state endometriosis pains get worse. Again that's giving the endo enough months to grow back if that's what its going to do.

So while you have the mirena in, please be very mindful that the particular treatment for removing your endo was by burning it off, then your endo could be growing back, but may not fully realise that till your mirena has been removed to feel the even fuller effects of your pain. I dont want to scare you. But it's happened to me. So depends on how sore your periods were prior to this operations, as to how much you want to risk giving the mirena a try on, especially considering your endo was burnt off.

I know the endo dr told me the mirena was easy to remove if I change my mind, and that it doesnt hurt etc. Wrong. Also my dr said to keep trying it for months and just keep having pain killers, when this option just made me sorer overall, even worse than I were to begin with. In other words dont let your endo dr tell you the mirena is easy and not sore. Also, make sure they're aware how sore you really are.

Just that the mirena does not suit everyone (and people have law suits put there about it etc), and do not let it ruin your job/life etc, as it did for me. But again, give it a go but not forever!

Thank you so much for all this information, it honestly is super informative and it’s great (not really in terms of having endo) but not being alone through such experiences. And I’m glad you’ve given me a heads up on the removal because they honestly paint it out to be a really easy and painless procedure. When I think about it, even my internal ultrasounds were really painful, so I can’t actually imagine being awake to have this removed!

I will definitely look more into finding another surgeon that specialises in excision. And you’re right in expressing the importance of doctors who keep up to date with the latest methods and research, especially as endo/adeno is still being explored. I will keep all of this in mind.

Will keep you up to date in a months time, I also hope you’re pain free and keep preaching this info - more ladies need to see these things :) x

Awesome, I feel like my 3.5 years extreme pain experience and 3.5 years research has officially helped someone 😁 🤸‍♀️🤸‍♀️ your story sounds as lost as I was 3.5 years ago. Just dont go down my road.

Let me know how you get on. Xx

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