Print

Please login or register.
1 Hour 1 Day 1 Week 1 Month Forever
Login with username, password and session length

[Jett]

Hi AnneDenmark,

Oh my goodness you poor soul that sounds awful, I am so glad your friends encouraged you to get advice and really glad to hear that it has been removed.

My symptoms are nowhere near what you had to endure. I am actually feeling like it’s gradually improving.

Wishing you the best and really hoping you can find a solution which makes you feel better. 

Take care, glad it’s gone for you now.

Jxxx

[annedenmark]

Hi Jett,

Its been a couple of days now and I feel so so different, can't believe now how much better I am, not heavy headed, sedated or ill.

I'm really glad you're doing okay and continue to improve.
Not sure what next steps are for me. I've got time to think now; I am having a very very heavy bleed....

[Cocobra]

Good afternoon everyone,

annedenmark, what a fright! Although a relief you are feeling better, it goes to show how important it is not simply to monitor symptoms (though in your case, not much to ignore or not monitor given their severity!), but also to get someone to see you and hear you seriously.
Anyway, really sorry you even had to go through this, but then did you know, could anyone foresee such a reaction? And is the heavy bleeding a reaction to the removal of Mirena? I hope you continue to be monitored: heavy bleeding should not be standard (and that's why I was given the Mirena in the first place).

Best of luck and keep us posted. And thanks, too, for alerting us to he info on Mirena coil. I don't wish to speak too soon still, but so far so good.

All best for a proper solution to your bleeding!

[annedenmark]

Hi All,

I am much better. Tired, but I guess that's to be expected after the rather stressful week. Cocobra, no, I don't think my reaction could have been foreseen, as my side effects (brain fog, dizziness, blurred vision, tinnitus and pressure in my head) were unusual.  The bleeding is a reaction to the Mirena removal- I suppose the 19 days of levonorgestrel acted as a cyclical progestogen would in this instance. It's stopped now, just a particularly heavy bleed, that's all.

I think I have been unusually unlucky but that's just life. I am really pleased it's working out for you Cocobra and Jett, it's good to hear that it's making a difference to someone xx

[Cocobra]

Dear Annedenmark,

yes, with these things (and I dare say, life in general) it's a question of trial, error and luck. At any rate, I hope you will feel better now that you've come to the removal.

All best for a proper recovery from this ordeal ...

[LeePixie]

Hi AnneDenmark, I had the Mirena fitted about six weeks ago and for the first week my anxiety levels were off the scale. They were pretty much at panic attack level. Since then, I have had that persistent pressure around my head and ultimately, a huge flatness and lethargy (mentally and physically). I actually feel like the person I was before the insertion, is gone. From one week after getting it in, I have been trying to get it removed and at long last, I have an appointment on 23rd August with the hospital that fitted it. No-one else, GP or otherwise would take it out and all have said it is highly unlikely to be the fault of the Mirena (despite it very obviously causing my mental spiral as soon as it went in).

I think it's frightening that something which can so radically alter the mental health of a person, is so freely administered without accurate warning. I understand that I (and you) are in the minority as it tends to work for most women, yet the debilitating side effects are clearly not articulated at the onset. Labelling the side effect as 'mood change' does not cut it in my opinion.

I am keen to know how quickly you felt your head clear once it was removed? This is what I am desperately hanging on to - that I will get rid of the heaviness in my head!

xxxxx

[annedenmark]

Hi Cocobra, thank you - I do feel better, for now (I'm progesterone free); and I am going to be very careful now about which progestins/ progesterones I'll consider, and if I can't settle on one with bearable side effects then I'll give up HRT: it's not worth living in that horrendous zombie state.
I'm seeing the meno consultant soon so I'll see what they suggest. Have to say I'm not hopeful, but I'll keep you posted.
 
LeePixie, Hang on in there, I think it's unacceptable that you can't get it removed sooner, and I really, really do know what you're going through, it's an awful state to be in. So, within 24/36 hours I was 'almost' myself; I was a bit hormonally up and down for the following few days (well, obviously) but the head symptoms - the pressure in the back of the head, the vision issues, tinnitus and general 'drugged' feeling were gone within about 2 to 3 days. (see post below on 4th August - I had it removed on the 1st) About 7 days to completely feel like I was back to my old self.
I agree that  its disgraceful that women aren't told about potentially serious effects. Losing one's sense of self - being able to think with clarity, plan, organise,  DO things, interact with friends and family -live- in other words - these are the very factors of who we are. So best of luck, LeePixie. You WILL be back to yourself soon. Take care x

[LeePixie]

Thank you annedenmark, such a lovely message to read. It really helps! It's good to have some kind of expectancy on how things might play out when it's removed. Very comforting too to know it's possible to regain my sense of self 

I'll definitely post afterwards on how it goes.

Thanks so much again for your kind message and you take care as well.
xxx

[Cocobra]

Dear Both,

I wish you both of you best of luck going forward, but can I just say that I agree about the ease with which doctors get us to use Mirena without guaranteeing a swift removal if things don't go according to plan? When I was proposed to have Mirena years ago I refused precisely because I was worried that once inserted it would take a long wait before removal if I had not been happy with it. I therefore went down the patch route, but you are both testament to my fears. Might we put pressure on the medical profession to commit to a proper care? It sounds as if the habit is 'put the coil and good luck'!
The hippocratic oath must work for women's health too ... But given that Hippocrates was a man living in antiquity .. Sorry, my facetiousness is a mirror to my frustrations at reading you!

[LeePixie]

Hi Cocobra, you're 100% right about the 'put it in and good luck' approach. It seems to me to be so antiquated in times of modern medicine that we have to have a device (contraption) put into our bodies and one that comes with all of these unknown outcomes depending on the woman herself. I really don't want to put other women off it because as I said before, we seem to be in the minority, but I agree that there at least needs to be more awareness, even within the medical profession. I believe that they are sold a story (by the FDA and pharma) and it is not questioned or explored. All women are not all created equal and it can never be an exact science when it comes to us! It is particularly worrying that there is so much anecdotal evidence out there that women have been told it could not be anything to do with the Mirena as it delivers the hormone locally, and not in to the blood stream; as though these women do not know what is going on with their own bodies. It think that feeds into the anxiety they already have and so it spirals. 

[annedenmark]

I asked and asked about removal and was constantly assured that it could be removed if I wished. When it came to removal of course, medics were away (August) and no one was available. So A&E it was for me.
I was also told it wasn't systemic, which of course it is: albeit a lower circulating dose than other progesterones/ progestins.
You're right LeePixie that on the whole we're told to get on with it and it cant be anything to do with the Mirena: it's side effects, give it time etc etc. But there is lots of evidence out there now about women not tolerating the Mirena or indeed the progesterone part of HRT: because we know our bodies, and we know what makes us feel well or worse.

I suspect, and I reckon I'm not alone on these message boards, that progesterone is being over prescribed to ensure endometrial issues are very unlikely to occur, and this might be because routine testing is not available and too costly anyway.
And I agree too that the Mirena is an easy option for the medical profession. It's cheap, and there can't be any non compliance by us naughty women. Once it's in, it's in. I'd like to find data (if there is any) on whether it does work for the progesterone intolerant.

And, you don't have to thank me LeePixie, it's nice to know I might be helping someone - and I'm pretty certain you'd do the same x