Sticky Blood-Hughes Syndrome Support
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Mirena coil

Hi girls , I haven’t been on here in a while . Health been pretty good since I have been put on Amitriptyline , most of my symptoms have gone 🎉🎉. I decided to have a coil fitted because since being on Warfarin my periods have been horrendous , my GP said it would help . I had the procedure done at the beginning of September and this is my first period since it was fitted . Guess what I have had a migraine every day and feel lousy , brain fog back,weakness ,etc . Has anyone else experienced this ? Flipping thing coming out , I can’t cope with migraines like this 🙈

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I had a mirena coil fitted on 4th July for the same reasons as you. I’ve not stopped bleeding since! Just the odd day here and there. I’ve now been referred back to gynae for a hysterectomy as I can’t have an ablation.

I had a coil fitted last November as well but I expelled it in January. The coil just doesn’t work for some people.

I’ve been told it should start to settle after 3 months but it’s not and my Drs agree it’s not doing what we set out for it to do which is a terrible shame as it would make life much easier if it worked well!

I’m sorry your experience isn’t great either. It’s still early days for you so I’m sure the Drs would give the same advice to you to ‘give it time’ - it’s up to you how long you’re prepared to wait with these side effects.

I’ve decided to keep mine in until I see gynae in November just in case by some miracle it settles. If it doesn’t then I know I’ve given it a good shot before I opt for surgery.

Kelly

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See my post to you both

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Let me know how you get on in November x

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For Amy and Kelly: I feel for you both as I had this dilemma going on and it was horrendous but I had had the ablation that didn’t work. My surgical decision came when I had a period that as per my husband said it looked like a crime scene yet no crime was committed. I will tell you this though. After all the bleeding, and stress of planning life around this bleeding, I wish I hadn’t waited so long. What a relief. APS can be stressful enough with all of its issues, with the period gone life can be so much more easier. If you want to pick my brain feel free to PM me. Good wishes to you both and anyone else suffering through this...

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Thanks Cindy it’s always good to hear from somebody who has been there and came out the other side better.

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What a shame, as it does work for some, I hope you can have friends and family to support you while everything gets sorted, it sounds very difficult. I hope you feel better soon. MaryF

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I had the mirena fitted 3 years ago due to my adenomyosis. I spotted for a few months and my hair loss got worse (it’s jot greT with the lupus) and my headaches were bad.

But after 4 months, it all settled and since then it’s been absolutely fine.

As Mary said it is good for some and not for others. But I was told when I had it put in that I need to wait for it to settle.

Good luck x

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Amy in the USA they prescribe Sumatriptan for migraines and it does help. Sorry you’re having to deal with all of that. Hope you get feeling better soon.

~ Dave ~

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I’m already taking them Dave

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Hi there I completely understand how you are feeling. When I had mine fitted it took around six weeks to settle down. It was a horrible six weeks with cramping headaches and pain, I definitely considered having it removed many times. But all I can say now, that for me, it is the best thing I did. I have not had any bleeding for 4 1/2 years and I’m due to have it replaced next year. I’m hoping that the replacement is not a repeat of the first six weeks. Do what makes you feel happy 😊

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This doesnt sound good..Im seeing my gynaecologist on Friday about having the Mirena coil due to extremely heavy bleeding.... they wanted to do an ablation too but focus now is on Miena. Hearing everybodys experiences Im not too sure about it now,

Debs

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hi, i had the same. had ablation which was great! but i needed hrt. as one can't have oestrogen and progesterone hrt as the progesterone causes clots. so i was put on oestrogen only patch and had a sub total hysterectomy . (its really difficult to get a gynaecologist to do this) but i did find one. so no more bleeding, or headaches! lots of my symptoms, like brain fog and energy have really improved.

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But the Merina has progesterone in it 🤔could this b why I feel crap ? I’m going to see prod haye today so will ask

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its their first thing to try as its cheap. I've never been able to tolerate progesterone , i.e. the pill. i also expelled the coil in a huge clot and went onto bleed so heavily for months, that my husband called our bedroom "the somme" i also felt like death. got the emergency ablation, even though i was asking for hysterectomy .the dose in the coil is tiny so does not cause clots. as so many menopause symptoms similar to APS, they could never be certain what was causing mine. so getting the hot has been fab for me.

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I am ( thankfully!) living happily ever after in menopause. But back in the day, I consulted with an open minded, but careful, physician who suggested I try compounded progesterone -which is chemically more similar (identical? I forget. Its been a while.) to the hormone which your body produces. It has less chance of prompting side effects. I was skeptical, but he talked me into trying it. And it changed my life! For the better! Monthly period output reduced by at least 50%! And regular! And shorter! And migranes fewer! And more energy! And less brain fog!

As he and I reviewed family history to explain the degree of this unexpected improvement, we theorized that there is an inherited tendency to estrogen/progesterone imbalance. I had tried birth control hormones before, but thry made me worse, not better. so my take away suggestion is: we're all different and, just as Mary has pointed out here so often refgarding thyroid testing, the standard "yes/no" hormone tests are not always helpful. And locally compounded, natural hormones are different -- though not many physicians will perscribe them.

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Hi amy1808

I Got the merina and it took about 9 month before it was optimal. But im so happy for it now 🙏 i really hope you find the solution that works for you 🙌 as others are saying, we are all different...

i wish you best of luck 🍀😃

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It could be the hormones in the coil, could u have had a copper coil instead?

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No only allowed this one

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