My experience of the Mirena IUD and Mirena Crash - please read if you are considering having the coil, or are about to have it removed

[Catness]

Hey everyone, I hope you're all having as pain-free a day as possible.

I thought I would write a post dedicated to my experience with the Mirena, as if I had seen something like this before I got mine I could have saved years of trouble and wouldn't be in the position I am now with the dreaded crash. However I want to preface this post by saying I am not in anyway medically trained and this is only my own personal experience, you need to do what you feel is best for you.

Also there are women who love the Mirena, some of them are even on here :), so best to ask a few people if you were curious about people's experiences. Though as you can probably tell from the title this will be a negative review. x ten.

I was pushed into having the Mirena by my consultant around the time I was first getting my diagnosis of stage 4 endometriosis, adenomyosis and interstitial cystitis. I was (and still am) refusing to try things like Lupron due to side effects however my consultant at the time was basically saying this was my only option. In my early twenties I didn't have the confidence to challenge the doctors or the knowledge of alternative therapies to try like I do now and so I reluctantly agreed to having it. It was inserted during my second laparoscopy under general anaesthetic (so couldn't tell you what insertion was like) and after the op I was recovering from the lap so also couldn't say what it felt like after.

My coil took around a year to settle and during this time I was still getting periods, though they were becoming lighter, and I was getting light and dark brown discharge (old blood) daily. I went to my consultant about this who very flippantly just said 'yes well that's still better than 2 week long horrendously heavy periods'. For the entirety of my time with the Mirena I had to wear some sort of panty liner daily due to this. I thought it was just my body however since having it removed I haven't warn a liner on a single occasion and have just had 'normal' discharge... so that was just one of the nice 'gifts' of the coil. Have just looked online... this is a listed side effect... facepalm.

Prior to having the coil inserted I was working 40 hours per week with a two hour driving commute everyday. I had an active social life and I was the lead singer in a band (so naturally outgoing and energetic). However it is only now looking back after the 4.5 years I had it that I can recognise how the insidious side effects of the coil crept in. I started slowly becoming a little more anxious which I put down to stress. My fatigue levels were creeping up which I put down to just generally not feeling very well. Though I was still going to the gym, my weight went up a little bit (around 7 pounds) but I was watching what i was eating very strictly. Around the year mark my periods stopped altogether - fantastic I thought! I quite my job, my band ended and I started going to university and did very well, no more periods stopping me from leaving the house! - Even I will admit this is a lovely benefit I experienced of the coil.

My skin however started to get worse and worse. I was always prone to a little bit of cystic acne on my cheeks and forehead however this went from a 3 to a 10 in a matter of weeks. I am not exaggerating when I say that at my worst I lost count at 60 active pimples covering the entirety of my face - I have the photos should anyone want to see! My diet and lifestyle hadn't changed. I went to a dermatologist who said that the acne was so bad it was now considered a disfigurement and I was put on isotrentinoin (accutane in the US) on a low dose for 10 months. I asked the dermotologist if it could be the coil but he didn't think so as it is something he asks female patients to have inserted whilst treating with this drug as you need two methods of contraception whilst taking it. For those that are wondering I had zero side effects on accutane other than dry lips, my skin got better and better and my dermatologist was very sympathetic to all my illnesses (I also have ME and fibromyalgia) so we started at a micro dose and built the dose up very gradually. My skin (thankfully) has stayed clear - hooray!

I was still trying to get through life bumbling away. My anxiety crept up higher and I started to see a psychologist. I felt blue quite often (was diagnosed with depression) and I just put this down to being unwell, having so many diagnoses of chronic illness in my early twenties. I started to get social anxiety and also experienced extreme anxiety in situations such as busy restaurants, going into town, on aeroplanes, busy classrooms etc. I would also get what I can only describe as Adrenalin rushes - I would be fine one moment and then a rush or wave of adrenalin would come over me and I would feel sick and shaky for no apparent reason. And again I thought this was just my brain, I was just an anxious person and needed to work on it. I still hadn't quite put it together that this had only happened since the coil.

Also my libido went plummeting.. again I just put this down to chronic pain and illness.. I also experienced severe joint and back pain and was diagnosed with fibromyalgia. AAAND I started to carry my weight around my hips and stomach.

Oh! and I started to get weird obsessive thoughts about really unpleasant things.. diagnosed with OCD and again just thought 'well... my brain is obviously not very well'.

Coming to the end of my coil's lifespan (you can have it in for 5 years) I started to think about if I wanted it replaced. There was just something that told me not to do it. Even though I hadn't attributed any of the negative side effects to the coil I trust my instinct implicitly and started to make plans to have it removed. I had to wait until my next laparoscopy as I have severe vaginismus so couldn't just have it removed by the GP.

It gets to around 4 years of having the coil and I had a shower epiphany. I don't know why.. I just do my best thinking in the shower. It was one of those 'SHUT THE FRONT DOOR... HOLD THE PHONE.... THIS HAS ALL JUST HAPPENED SINCE THIS THING GOT PUT INSIDE ME' horrifying realisations, made worse by the fact I couldn't rip it out there and then. So I started doing a little bit of googling - once out the shower of course - to see if anyone else experienced something similar.

Of course they ruddy did. It's all over the blooming internet.

But the one video that really helped me understand more about the coil was this one:

youtube.com/watch?v=DdYOm01...(Not working as expected?)

This video is by an American doctor Dr Jess Peatross who is actually a traditionally trained medical doctor but has since pursued an alternative treatment pathway. She had the IUD herself and she talks about her experiences and mood changes. The first half of the video is more on the coil and the later half is about oestrogen dominance and how our lifestyle contributes to this.

What is really helpful is how she explains that even though the Mirena is sold to us as having a localised hormone it can actually adversely effect the whole body, particularly when removed.

She also talks about the materials that the Mirena is made of which can also cause problems in the body.

So I had decided to get it removed and had my laparoscopy in March this year. Admittedly my recovery has been difficult, my interstitial cystitis has flared to a ridiculous level and so that's been tough. However what was made even tougher is what can only be described as an extreme manic episode. My anxiety was so bad that I had to sleep in my mum's bed for a week having convulsive anxiety attacks (I'm 28 guys... not my finest moment). Suicidal thoughts which I hadn't had before. Depression that just rolled in waves. Time seemed to go so slowly and I would just beg the night to come so I could sleep as I felt so far away and disconnected from everything... but oh! look at that. No sleep for you. Insomnia instead. For the first 4 weeks of my recovery I didn't sleep more than 3-4 hours per night which didn't help my traumatised brain.

I just put this down to me having a hard time after the op. Maybe I was just going through a particularly tough period right now.. maybe the drugs they gave me during the anaesthetic and at hospital just really affected me. WAIT HOLD ON SHOWER EPIPHANY. Googled Mirena Crash. ...

....

...........................

Just couldn't believe what I was reading. I STRONGLY recommend anyone who has the mirena or is thinking of getting it to read this blog and the subsequent comments:

mystarvingartistlife.com/bl...

So many women in the comments just flabbergasted (not a word I usually use) that someone has been sharing their experience with the coil and subsequent crash - weight gain, anxiety, depression, panic attacks, dizziness, blurred vision, mood swings, hair loss (yes I had this too... just thought it was me loosing hair), acne. Women who since having it removed have felt like they have needed to be sectioned because of how out of control they feel.

So what is the Mirena crash?

My very limited scientific knowledge understands it as this: if you have the IUD your body is used to having a synthetic progesterone pumped into it daily and therefore stops making it naturally for itself. When you have the IUD removed your body, and more specifically your hormones, crash as it takes a long time for the body to start making progesterone naturally again and what you're left with is unopposed oestrogen and oestrogen dominance.

My experience of the crash has been INSANE. However finding that blog post and reading everyone's experiences has been helpful. What is quite scary is how the majority of women commenting on the blog (there are 163 comments and counting people) have admitted it has taken MONTHS for things to regulate but the general consensus is that after around 12 weeks after removal they have started to feel much better in themselves and some of the side effects have dissipated.

I'm happy to report that at 10 weeks post-coil I am now sleeping around 6 hours a night instead of 3-4 but I still have really vivid and unsettling dreams (another shared experience of the crash). My period hasn't regulated yet. My anxiety has come down A LOT but it's still there low level much worse than before the op. I did my first whole day on my own last week. Every day that passes now I am starting to feel like my old self which just further illuminates how insane the last few weeks and years have been. I am starting to see the light at the end of this hell-hole and so I felt it important to share this knowledge in case there is anyone out there also experiencing the crash or thinking about getting the IUD (please don't!).

And if my little story isn't enough information for you I would just like to point out that currently there are NUMEROUS lawsuits against the makers of the Mirena Coil, Bayer, and some of them are particularly for the crash experienced on removal. Here are the receipts if anyone wants to read them:

citywidelaw.com/what-is-the...

consumersafety.org/legal/mi...

justiceforall.com/blog/what...

ctvnews.ca/health/health-he...

NOW my goal here isn't to panic anyone. And like I said at the beginning there are some people who have had great experiences with the coil, and no problems with the crash, and I think it would be really helpful if they could share their experiences in the comments so we get a balanced overview of the coil. But. I just really wish I had more information before I made this decision and whilst going through the throes of the crash it would have been really helpful to come across a post like this to see that I am not alone and I didn't need to be locked up.

If anyone has found this helpful I also have a few other posts I was thinking of making such as: how I have found women's pelvic floor physiotherapy to be really useful, endo diet, alternative therapies etc. I was wondering if I should post them here or get a little word press blog or something. So it would be great to have some feedback

And if you made it all the way to the end of this post I salute you, and thank you xxx

Kitty

[Hansen82]

Oh I’m sorry for your pain!

I’m going to the gp tomorrow to demand my coil is removed! It was not the painfree treatment that my gynae thought it was. I’ve preserved for 18 months hoping it would settle. I’ve come across a book called “how to heal endometriosis naturally” it’s very interesting read. It gives the authors view of her experiences in a factual way that is not condescending. I’m hoping to see if the nhs will prescribe progesterone cream. And will explore a nutritionist

Wishing you good luck

[Catness in reply to Hansen82]

Let me know how your removal goes! Best of luck for it xxxx

[Bran5dy9 in reply to Catness]

I only had very painful cysts. I had adeno. by the way. I was 1 out of the 12 that got painful cysts. It did lighten my periods a bit. I only had it in for a few months. I surprised that it had that many side effects. I am sorry that happened to you. I am glad your getting some relief now.

[Hansen82 in reply to Catness]

I got fobbed off by gp, who wants me to be referred back to gynaecologist

[Hidden in reply to Hansen82]

This book worked me. For me I am so glad I turned away from medical model, healthier ways to treat Endometriosis which medics are sadly not embracing.

[Thecraftyadder]

👏👏👏 I applaud such a detailed post. You already know what a rough time I had with the coil in and subsequent crash and it that wasn't even in for that long! Glad things are picking up for you and you're not far off that 12 week mark now

[Catness in reply to Thecraftyadder]

Thank you! I hope this helps the people who go through it after us xx

[AllthatGlitters]

Hi Kitty thanks for your post. I have had my GP, consultant, nurses all saying to go for the Mirena. Always push for it but the answer is always a no. I simply do t want anything put inside my body which I have no control over. I had the implant and that masked a lot of problems for me as well as giving me a few problems too.

Hope you are feeling better.

Like you I have adenomyosis and fibromyalgia and I couldn’t bare the thought of someone poking about there with a coil, even a smear is painful and it’s our right to say no

[Catness in reply to AllthatGlitters]

Absolutely spot on! You’ve got to be your doctor and advocate when you have endo or any of the other related illnesses and trust your instincts xxx

[Flicque]

Hey,

Thanks for this post. I always reject the cool idea and it’s always pushed onto me aswell as the pill. I am so glad you took the time to write that and I’m sorry you have had such a rough time, you sound extremely resilient and still have a sense of humour about it!

Glad to know I’m doing the right thing here. I don’t think NHS doctors have enough understanding of hormones and their effects on the body.

More research is needed. Good luck on your recovery - I love those shower moments! I have had a few epiphany’s myself! Amazing

F x

[Catness in reply to Flicque]

Thank you Flicque! I’ll admit my sense of humour only decided to fly back to me in the last couple of weeks but I’m jolly glad it’s back now.

I absolutely agree that they have no concept of what messing with your hormones does. I reckon I will be trying to balance mine out for months and months xxx

[Bea_L]

I had my coil removed after 4 months with it which I had inserted during a lap as you did. My skin was awful (I looked like an acne-ridden teen), I was bleeding daily as you were (mostly brown blood but some new blood too) and the pain that I was originally getting with my periods which would last around 5 days would last 14 or more due to my periods being a lot longer. I had mine removed around two weeks ago and I’m still bleeding (fresh blood) but hoping this will stop soon. My skin is finally starting to calm down though. I understand that it works for many people (which is great!) but my experience was that it made things so much worse!

[Catness in reply to Bea_L]

Thank you for sharing your experience and I’m sorry you suffered too, so glad to hear your skin is calming down xxx

[Thecraftyadder in reply to Bea_L]

I went through this recently to. The withdrawal bleeding is scary isn't it! Mine didn't last as long as yours but was soooooo heavy! Just drink lots of fluids and I tried to eat lots of iron rich foods because I felt so weak. (Mine came with a 5 day migraine as well!) It will pass! The next few periods will be heavier than usual and then your body hits normality again

[hm89]

Thanks for sharing this. I thought the coil was the least hormonal option so it’s shocking to hear that it can have such awful side effects. My fear with it was always that it can (and apparently very frequently does) dislodge and have to be removed via surgery. I would love to know more about your alternative treatments though. I’m on the pill and just really tired of hormonal treatments.

[Catness in reply to hm89]

Thank you for commenting 😊 yes I was fed the line that it was the least hormonal option too, unfortunately for many of us that isn’t the case. Okay I’ll do another post in the next week or so talking about everything xxx

[Hidden]

Yes i literally recoiled at the mention of a coil. They tried to sell it to me as 'it is so wonderful your periods stop.' No, no. I love having periods despite the pain because I feel feminine and stopping them seemed insane to me. I got complete relief from endo pain by alternative methods and find it enraging medics are unable to listen to people who find relief in such a more helpful, functional way. Outrageous the side effects are not more widely informed when you get the coil. Equally though I suffered bad mental health with most of what you experienced before i got endometriosis. It was put down to grief/ptsd. However I found relief in my mental health symptoms with reducing oestrogen and inflammation designed to help the endo. Perhaps your symptoms are down to a combination as if i had been on hormonal control I might well have put the mental health problems all down to that. It could be down to the mechanisms involved with endo.

[Catness in reply to Hidden]

Thank you for your reply. My mental health was so much better pre-coil despite stage 4 endo running rampant so I’m not sure that’s my case but definitely worth considering and investigating more! Xx

[Hidden in reply to Catness]

Unsure if you know of Lara Briden, she uses scientific evidence highlighting flaws in hormonal contraception such as the coil and the side effects. I personally have found her work really refreshing. She is on social media and has her website.

[IndigoMoon1234]

I was just wondering if you are absolutely certain the minera coil was the cause of your symptoms. What you are describing sounds a lot like Fibromyalgia. I basically have the same symptoms as you and my doctor told me last week she strongly suspects I have fibro.

Good luck. I hope you get the help you need. xx

[Custard32]

Thanks for your post, Catness. Sorry to hear you went through all that. When I had my lap in March it was really pushed on me too. All the medical staff were very surprised I kept saying no. After my op, one of them who had operated on me came over and said ‘I shouldn’t say we told you so, but you really should have had a coil inserted...’ I still think I made the right choice. I didn’t feel myself on hormonal contraception years ago and didn’t want to go back to that.

[Catness in reply to Custard32]

You’re absolutely right to stand up for yourself, I wish I did xxx

[FlashbackIVF]

Wow! I had my second lap a week ago and I’m so glad I said no to the Modena!! They asked me at least 3 times too! Nope 👎

[Catness in reply to FlashbackIVF]

Yes! Listen to your intuition! Xx

[Jensx1]

Omg it’s exactly how I have been and only 3 weeks after 1st op!!! Thank you so much I will speak to my consultant on Thursday and see about getting it removed xx

[Catness in reply to Jensx1]

If you want it removed don’t let them fob you off and tell you to ‘wait for it to settle’. You know your body better than they do xx let me know what happens!! Xx

[Jensx1 in reply to Catness]

Will do thank you xx

[Curious123]

Thank you for this post. I was diagnosed with sever endo a week ago and my FS keeps suggesting the Mirena but I just don’t like the idea of not being able to control my own body.

[Catness in reply to Curious123]

Listen to yourself, it’s so so important <3 xx

[Hidden]

I’m due to have a lap in August and the gynecologist is planning to insert the mirena during the op, I’m going to tell them I don’t want it now, was already thinking I didn’t really want it but your post has made my mind up. Thanks for sharing. x

[Catness in reply to Hidden]

I’m really glad this has been helpful and don’t be bullied into doing anything you’re not comfortable with. Best of luck xxxx

[RhiannonT]

Thank you so much for this post!! Every single gynaecologist I've seen (3 in total) and most GPS have tried to convince me to get the coil. I've been doing loads of research online and I've decided I definitely don't want it. Don't get me wrong, I know for some women it definitely works. But I've just read too many negative stories I just really don't think it's for me. Thank you so much for such an honest post. 😊 Xx

[Catness in reply to RhiannonT]

I’m so so pleased this was helpful for you. Absolutely listen to your instinct,

I wish I had! Xxx

[gettingusedtoendo]

Hey, two years later so you probably won’t see this but this is making me so anxious. I’m on a waiting list for the mirena coil and the idea already makes me feel physically sick. The thing is the consultant I spoke to literally only mentioned the mirena coil and as he’s an endo specialist I just blindly agreed. Later I read he should have go over all treatment options and their pros and cons. I am now prescibed the mini pill to bridge the gap. Can I ask whether in your opinion the effects of the mini pill or implant would be any different to the mirena coil, since all are progesterone only? I need to do something as I fear my body is getting more damaged with every menstrual cycle. Thank you

[Catness in reply to gettingusedtoendo]

Hi! I never come on here anymore so apologies for not responding. It took a year to regulate my hormones and the coil messed my hormones up so bad I now have PMDD. I will NEVER again have any type of hormone again. I have stage 4 endo and adenomyosis and there are PLENTY of other ways to manage both diseases without the ‘bandaid’ that is hormones. I suggest booking in with this woman: thewellwomanproject.com

She was a nurse who was diagnosed with endo and adenomyosis and then trained as a herbalist. She will tell you more in 30 mins than any dr you’ve seen I promise you.

I manage through diet and lifestyle as well as complimentary therapies such as accupuncture. I also follow Nicole Sachs LCSW’s work (Google her name and her work will come up). My bowel is fused to my uterus and my endo is extensive but I rarely have any pain now…. I hope that helped ☺️ I probably won’t come on here again so I would just say look into the links I’ve posted and follow your gut! If you don’t want the coil don’t get it just to appease a patriarchal system of outdated gynaecology xxx