Severe progesterone intolerance and the Mirena

[HeyIndy]

Hello, has anyone experience severe progesterone intolerance with the capsules and then the Mirena coil? The capsules led to severe dread, freezing and anxiety and so I came off them. Went on the coil instead and had a very severe reaction, just total hormonal chaos for a month that overwhelmed/collapsed my nervous system. I was in bed for weeks, barely able to get to the bathroom. Strong adrenaline surges, bad nausea, no appetite. As that eased I had panic/anxiety attacks every morning, sometimes into the afternoon. But over time these attacks seems to be easing and it seemed like I might be able to stick it out. But last week I had a severe set back for no clear reason. It's caused the most intense panic attacks I've ever had and introduced very depressed thoughts that I hadn't previously experienced. I'd been told by the specialist that my body would adjust to the coil if I could stick it out for 3 months. I've now been on it for 3 months.

I feel trapped in my body knowing that coming off HRT will make things worse but staying on it feels intolerable. It feels like the only way out is dying. I'm not suicidal but the thoughts of dying being my only escape terrify me. The progesterone has destroyed who I am and I can't see any future. My brain feels so hijacked by the progesterone intolerance that I can't trust my mind, I can't trust that things won't escalate further and cause me to end everything - not because I want to die (I really don't!) but because I can see dying as the only way to end this nightmare. I'm scared for my children, that they will grow up without a mum. I would never do that to them in my right mind - but my mind has been hijacked and I can't trust it. I want to come off HRT - I just can't take any more. And most importantly for the sake of my children. I should add that prior to HRT I had no mental health issues - I only went on HRT because of hormonal migraines. The progesterone hijacked me 7 days after starting the capsules and then the coil.

Has anyone else experienced this? And has anyone else experienced coming off HRT and the coil? I'm terrified that coming off will make me worse, especially coming off the oestrogen which could enhance the anxiety - and I really am at my limit now. I want to be in hospital on very strong sedatives. Any advice or experience would be most welcome. Thank you

I just wanted to respond to your post. I had the Mirena coil fitted to address my very heavy periods associated with adenomyosis. However, clearly I was very progesterone sensitive, as it made me incredibly ill. Lots of intrusive thoughts, depression and anxiety. I got them to take it out and was put on sertraline and beta blockers to address the anxiety, intrusive thoughts and depression. I don't know if it was a placebo effect but as soon as the coil was removed, I started to feel better. I'm still on a low dose of sertraline but am feeling much better. I have now reached menopause but can't really take HRT due to familial breast cancer risk but I would be nervous to anyway due to my progesterone sensitivity.

I started to feel very anxious and depressed after being on Evorel Conte for years. Thought I’d be better in oral progesterone. Made me feel very anxious and down.
i was so anxious I came off my oestrogen abd just use progesterone cream, bought online. It’s helped but having aches and pains from stopping oestrogen now!!
please ask to have the coil removed for your sanity!!
yiu could go in Sertraline for a while to help your anxiety?x

Thank you SunnyViewer, that's really reassuring that you felt better after the coil was removed. I've also been prescribed an SSRI (Escitalopram) and a beta blocker which has helped until this sudden escalation. I'm now taking diazepam to help with the panic and intrusive thoughts but I can only use this for a few weeks due to the possibility of addiction.

Thank you Lizzbear. I agree, I need to come off the coil. I've given it my best shot - 3 months of hell hoping I would adjust to it. It just hasn't happened. I've been prescribed Escitalopram to help with the anxiety but I'm not sure it's doing much. I've been advised to increase the dose. At the moment I'm relying on diazepam which isn't ideal.

It’s awful. I totally empathise with how you’re feeling. Natural progesterone is supposed to make people feel calm, but I can only tolerate it as a skin cream.

I had to double check i hadn't written this post.

I have struggled with every progesterone I've ever been prescribed.

I didn't use hormonal contraceptives for nearly 20 yesrs so when I started HRT, it was a massive shock.

I have been on utrogestan for a few years, i take it cyclically as I need a week or so of feeling 'normal'. But I admit, I waa taking it less and less and my bleeds were getting almost unmanageable.

Last month I really tried to stay on it 12 days, by the 12th day I no longer wanted to be here. I realised I needed to stop HRT as its been awful.
I effectively traded one lot of issues for another.

I spoke (bawled) to a lovely GP and she prescribed me SLYND.

So far, so good, my moods ok but if it drops again, I will stop HRT as I'm scared of what I could end up doing to myself due to the progesterone part.

@Lizzbear There is very little science showing progesterone cream works. Is it the sort you buy online?

@HeyIndy You really need to see a menopause specialist if you can either via your GP or privately if that's an option for you.

There are numerous different types of progesterone and ways of reducing the dose if you're very intolerant.

For example, you can (under medical supervision) have a 3-monthly cycle so you're using progesterone 4 x a year.

You can try Norethisterone, (in most patches or a tablet to take with estrogen-only) the mini pill ( in a larger dose) and the sort of progesterone that is in the tablet form of HRT Femoston.

These options are all there to try.

But if you only use HRT for hormonal migraines, maybe you need to see a specialist for help with migraine that won't include HRT?

YES!

I went on HRT for peri symptoms (flushes/night sweats/brain fog etc) but the progesterone part of the HRT affected me terribly.

I would be so anxious it was ridiculous. I had awful thoughts, my mind was constantly whirring, I couldn't sleep. I would eventually nod off then wake with a start with my heart racing. I felt constantly wired and on edge. Added to this I also felt so sluggish and absolutely exhausted. So for 2 weeks of a month I felt good, and the other 2 weeks I felt shocking.

I felt like you, I thought I couldn't cope with this any longer as it was so consuming. It was ruining my life.

Despite switching HRT, I still got the same symptoms on the progesterone, no matter when and how I took it so my GP took me off the HRT as it was clear that I was progesterone intolerant.

I felt awful because I kept reading how HRT had changed lives and given women their mojo back and they felt better than ever, yet it seemed to have the exact opposite affect on me so that made me feel sad and desperate.

I have been fine since coming off the HRT and that wired feeling slowly got better and now its gone completely, and my anxiety has gone. I have had no alternative than to go it alone and to try and find other ways to combat the original symptoms which came back once I stopped the HRT. So I started researching supplements.

I have found a combination that works for me and while its not perfect, its HEAPS better than how wired and unwell I felt on HRT.

Combined with eating healthier, reducing alcohol, walking and lifting weights, I feel better than I have done in ages.

I look back at those days now and its scary how poorly and out of control I felt over my own body and emotions and how scary it was that I felt like dying would be an option as it would take it all away.

I am sorry you are going through this too. But speak to your GP and it may be that you need to ditch the HRT as I did.

Good Luck

Hi OP, that sounds awful. I felt the same way on utrogestan - orally and vaginally.

I managed 5 months and had a mirena fitted on the 6th month. I found it took a month to settle - lots of tears, massive boobs, horrific bleeding for a month then it was fine.

I know things looked up at that point as I initiated sex for the first time in a loong time. It was also the same month I started using testosterone.

I find it pinchy sometimes, a bit crampy and due to prolapse it feels out of place sometimes. But I don't cry anymore, my endometrium is controlled and I sleep really well again.

That said I've had the adrenaline/ectopic heartbeats for years and years well before menopause, so I'm not sure I'd notice if the mirena had caused any more.

I bawled to my GP this morning. I feel less alone to know that others have been through the same thing. I will research SLYND as I haven't heard of that before. Thank you

Thank you for your message. I see a private menopause specialist because it was so urgent and I could wait 4 months to see the NHS one. I'm seeing her again on Monday and will suggest the options you've mentioned. Thank you.

Thank you. I feel so similar to how you describe. That's so reassuring that you got better once you came off the HRT. I've been scared that it's somehow ruined my brain or given me a permanent mental heath illness that I hadn't had before.

That's great that the Mirena coil helped you. I've also tried Utrogestan orally and vaginally and the effects were terrifying!

I struggle a bit with progesterone too - it's not easy to tolerate.
At least one of my friends has stopped HRT altogether as the downsides were outstripping the upsides.
I'd consider having the coil out tbh, that doesn't sound worth it. There will be other regimes to try and ultimately you can decide not to take any of them.

It was actually pretty scary to feel so bad and so out of control. Having thoughts that the only thing that would make me feel better would be dying was terrifying. Coming off the HRT, for me, put me back to where I was before but it did take a couple of weeks to feel like I was completely coming back to being 'me'.

I had never had anxiety or any kind of mental health issues before starting HRT. It was brutal for me.

I hope you feel better soon because I can sympathise at how awful it is to feel the way that you do every day.

I have progesterone intolerance.
I cannot tolerate the progestogen part of HRT. Never coped with the contraceptive pill, or the mirena.

I take Livial Tibolone as my HRT and it's the only one I get on with. They will only give it usually if you are post menopause for a year, but it was a game changer for me.
I wish more people were aware of it because progesterone intolerance is awful and it's even worse when the doctors make you try all the bloody different ones instead of believing you

www.nhs.uk/medicines/hormone-replacement-therapy-hrt/tibolone/about-tibolone/

Yes. But I’m only using it after stopping my oestrogen as it won’t protect my uterus from oestrogen. But helps with sleep.
if I go back onto oestrogen patches , I’ll take the progesterone capsule vaginally.
I’m just seeing how I feel on just progesterone cream. If I take it orally it affects my mood badly
its Wellsprings cream..

According to the science online, the type it is, cannot be absorbed by our skin.
It's not me saying this- it's info on other medical sites.

tha for sharing this. I’ll have a read about it. I’m planning to see a menopause specialist soon as I’m very confused about my hormones and might be better coming off hrt altogether, as I’m 60 now!

I’ve been on Mirena 18 months and the anxiety and feelings of overall unwellness seem to be getting worse as I go along. I’m having a scan to check its location next week but I think I’ve already made my mind up to get rid of it. Ij the past I’ve reacted badly to certain contraceptive pills. I’m thinking that my progesterone response means HRT might not be for me at all.

Is the Mirena the only progestogen you have tried?
If it is there are many others, so it's too soon yet to decide that HRT isn't going to work.

Did you choose the Mirena over micronised progesterone or other forms like Norethisterone?

Mirena is the smallest amount of localised progestogen that you can take. If progesterone sensitivity is being triggered by Mirena then the other types of creams and tablets are not going to be somehow tolerated.

Livial Tibolone

I am always suggesting it on threads about progesterone intolerance. It's a game changer

@Branleuse The Mirena contains a synthetic progesterone which is totally different to the others available. Many women do find they have side effects on it like weight gain, mood swings and acne. (I was offered it and refused even though the idea was a reeasonable 3-month trial.)

There are at least 3 other types available including micronised progesterone.
Some are in patches or tablets that can be used with transdermal estrogen.

Tibolone does come with its own risks and isn't always suitable especially as it's a tablet form with a slightly higher stroke risk. It's not 'mainstream' and is synthetic but if it suits you and you're happy on it that's good!