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Endometriosis UK
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Mirena coil for endometriosis

Hello! I had a laparoscopy on the 12th Jan and had the mirena coil fitted at the same time. Unfortunately my endometriosis symptoms have only gotten worse since (possibly because my surgeon couldn’t remove all endometriosis due to its placement), I was wondering if anyone else had experienced this. I would also be grateful if anyone would share their experience with the mirena coil (how long it took to work/mood swings/symptoms/effeciveness etc.).

Thank you for reading!

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The Mirena caused me IMMENSE pain (stomach, pelvic and vaginal). All day and night. It was unbearable for me. I also bled for a month straight until I had it removed. It’s different for everyone but was not good for me.

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I’ve got suspected endo but haven’t had the laparoscopy yet, still deciding if it’s worth doing. I just had the Mirena fitted yesterday and from the minute I got off the table I bled so heavily and passed so many big clots I ended up in the back of an ambulance and have been admitted to hospital. Doctor thinks we should wait to see if it settles because my alternative is the whole menopause injection thing and I’m only 23. I was told this would stop my periods after a few months, not off to a good start!

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Oh gosh! I wouldn’t wait a few months if the bleeding stays at that flow! That’s scary and could cause anemia! Praying for you, Marie!!

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Thank you!! Going to try and manage it with tranexamic acid and codeine but you're right thats what I'm worried about! I'll get it taken out if I start the heavy bleeding when I have a break from the meds. Is having it taken out as bad as having it put in?

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For me it was very easy. I actually did it at home because the doctors office was dragging their feet on approval via insurance. I don’t advise that at all lol but besides doing it at home, there was no pain. That could mean it wasn’t in well, too. Who knows!

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Hey,

I used to think the coil was the best thing since sliced bread. I’m stage 4 endo with adeno and I was having 2 week periods - one week house bound.

Got the coil, it took a year to settle and then no periods! Just weird kind of spotting when my ‘period’ was... super!

It’s coming up to its 5 year birthday and I’ve beeb reflecting on the coil and since having the coil in I have been hugely depressed, anxious, low libido, can no longer work, can no longer socialise and I have the most intense back pain. And that’s unfortunately the thing *some people* experience with the coil. An insidious dripping of symptoms that at the time I put down to being unwell, endo... maybe I’m just an anxious person.... maybe I just don’t want sex because of endo...

But pre-coil (still with stage 4 endo, adenomyosis, interstitial cystitis, ME and fibromyalgia) I was working 40 hours per week with a two hour driving commute, I was a lead singer in a band and had a really great sex life and social life. Even with 2 week periods of death like the shining. So that little AHole is getting removed in March at my next lap and I’m going to take my chances.

Now I’m not telling you what to do but I was also offered the menopause injections which I immediately turned down. Those drugs are chemotherapy drugs and the side effects are horrendous. I really advise following ‘NewYorkEndometriosis’ on Instagram. I’m uk based but the Dr who runs is gives such amazing information out and was discussing just that treatment the other day.

Now this is going to sound woo-woo and it’s not the way for everyone but I manage my symptoms through diet and lifestyle. Yoga helps my back and the endo diet (even though it’s a complete mission and generally a bit sad) has really worked for me. Caroline Levitt has published a second edition of her endo diet recipe and advice book and it’s an excellent resource and goes into the Why’s and How’s of the diet and gives some good starting points.

I also only use sanitary products that are organic cotton, non scented. In the U.K. there is a brand in my Sainsbury’s called Yoni or there is also &Sisters online, amongst others. This has also massively helped pain AND flow. I’m not science minded... I don’t know how it worked but it did.

There are always other options and I guess I’m trying to say don’t let DRs and consultants pressure you into decisions which could have long reaching consequences. The coil, which I was near enough bullied into having, has taken 5 years away from me. The menopause injection could be just as bad and there are always other things you could try first and then if that doesn’t work and it’s a last resort... so be it?

Not trying to sound hippie or preachy... I know how annoying that is. Just wish someone had given me this talk before I accepted the coil because it’s been so harmful.

Take care xx

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Thank you so much for this it was really helpful! I was actually told that the coil was the only option, not sure whether this is because I’m 17 and doctors didn’t want to suggest things such as the menopause injection (I hadn’t even heard of it before now!) as I am so young.

As for the side effects, I’m experiencing quite similar symptoms to yourself and will definitely bring them up in the future with relation to the coil as I didn’t know they could be symptoms.

Thank you again for your advice it was really helpful, good luck for your lap next month!

Xx

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No problem, glad it helped 😊

Don’t be surprised if you get absolutely no reaction from your doctors with these symptoms.. there seems to be a blanket wide ban on admitting the coil is the devil in the medical profession. I watched this YouTube video and found it helpful but there are hundreds/ thousands of women who have shared their stories. I use to think it was all horror stories about the coil online... and now I’m going to join them and share my horror story too 😂

If the link doesn’t post search on YouTube for : Dr Jess why you should not get the mirena coil. It’s on Jess Peatross’s channel xxx

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Hi! Thanks for sharing so much info, really helpful. It's such a nightmare trying different contraceptives because after a while I feel like I forget what I was like before I started taking them, and then usually I suddenly stop responding to them and just bleed and then I try the next one and the same cycle starts. All these changes- mood, energy levels, acne, back pain etc I try to convince myself its not that bad or its better than the last one.

The menopause injections were described to me as something that would stop that hormonal feedback loop between my brain and ovaries, and for me I get horrendous fatigue which is definitely linked to hormones before, during and after my periods. I'll sleep for 12 hours, wake up and have breakfast then sleep for another 5 hours and wake up bleeding! Its so extreme so I'm not ready to try it.

I've started to look into natural ways to help so thank you , diet is something I'm trying to use to help! Even if its just the reduction in bloating that helps reduce pain, anything going making my bowel feel bigger causes a lot of pain which has me curious about adhesions??

Ive been told to have a depo provera injection next week because I was due that and apparently the mirena will take a while to settle so It would be a good idea to have them overlap. I'll give it a chance but I'm not willing to suffer longer than a month or so , I'm on codeine now but I can still feel it.

Thank you for your help xo

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Hiya ☺ i lasted 11 months with the coil which they really forced on me at the time of my laparoscopy and said if that didnt work then the mini pill would be my next port of call as i suffer from aura migranes so cannot have a combined pill so i took the coil really feeling like i had no choice and after 8 months of having it i went to my gyme as i was having hip, back and leg pain everyday and also awful acne which was starting to scar my face and the worst of all was the anxiety and deppression which started of gradual and turned into everday crying wanting to scream i was so so down feeling hopless at times anyway i was given the choice to have it out there and then and try the mini pill or try to persist for 3 months more which i agreed as i felt like a failure for not trying long enough but i went another 3 months and things got worse the bleeding was more irregular too as time went on i went to have it out at 11 months and i saw a different consultant who was very angry at me and said it was all in my head as the coil only releases a small amount of hormones into you i didnt care i had had enough and had it out after she said well you better take this mini pill as you will end up back here back to square one with the endo growing back i felt like crying as its bad enough trying to put up with all the symptoms and always feeling like youve made the wrong choice and always feeling hopless. I tried the mini pill for 3 weeks i was so nervous as i had about 1 to 2 months break not on anything after the coil was taken out and i felt great mentaly, i then had to visit my gp as my breast were abnormally swollen and very painful she told me to stop it right away and go back in 3 to 4 months to decide on something else? i am sooo sick of hormones and given a choice i wouldnt want to take anything anymore as it just makes me so unwell anyway i thought i would share my experience it was not positive at all but i know it if very different for everyone i hope you it works for you i really do 💛 xx

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