@A MyEndometriosisTeam Member omg what a nightmare!! I totally agree - every medical professional (private to non-private) seemed to be pushing the Mirena like their life depended on it, even after I said no, they still tried to be persuasive (it made me wonder if they have some sort of low-key stake in it, like paid every time they successfully give someone the Mirena?). I only was persuaded when the private specialist mentioned it could suppress the Endo to prevent it growing back and could stop my periods (a plus for me, but there were no other better options). I agree that there should be more checks if the Mirena is suitable for the individual. I truly empathise with the pain!! In the 5 weeks post-insertion, the pain was INTENSE. It was a horrible electric-like sharp pain that would last hours and stop me in my tracks. Currently, the pain is still there, but more like a tolerable period cramp and then goes. I also find it a struggle with work, not only after the surgery, but also before I was diagnosed with Endo. many workplaces don't even know or understand what it is or like to live with Endo and hence the lack of empathy and adjustments. The lost opportunities for promotions, career growth from endometriosis symptoms and painful recovery after surgery and management makes me feel very helpless, behind and guilty. I'm currently considering leaving my current full-time job to look for something remote and part-time, as I just don't think full-time would work for me anymore (plus, I honestly think they're sick of me from all the sick days I took). Thank you for your reply and being so brave sharing your story. Very relatable and sending you lots of hugs and well wishes xx

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A MyEndom...

I tried mirena and was told bedding in time was 6 months, I persevered and was in terrible pain most of the time. Had it removed after 4 months. A year later during a hysteroscopy it was found that my uterus is heart shaped so no chance of the mirena staying in place. I don’t think enough checks are done before mirenas are inserted, on whether the uterus is able to hold it. I really felt pressured by multiple medical professionals to try it and eventually gave in, and it was a bad option for me! I wonder how many others are going through the same, unawares. Should add that this period took so much of my energy that I ended up losing my job through redundancy, I’m sure it was a contributing factor.

I'm sorry you're going through this - I completely relate! I had the surgery and UID insertion about a month ago and haven't stopped bleeding since. Sometimes lighter and sometimes heavy clots, changing pads every hour. I used to use a mooncup but I'm nervous using it with the coil. I also was really against having it until the specialist said it would slow down the endo coming back. I've been getting those pains @A MyEndometriosisTeam Member that you described too every single day - waking me up at night, stopping me in my tracks. I feel like with just the endo, I knew the rhythm of my body inside out, to the day and could plan for it but now it feels like it's just taking over my life. I got prescribed mefenamic acid for the cramping but I don't love taking these tables every day for weeks on end. I'm really struggling with whether to get it taken out or persist. Like I don't want to be going through this every day for 6 months - a year. Doctors say it's normal but they're not the ones living in this constant pain and bleeding. So I honestly don't know but am with you on it

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A MyEndom...

oh gosh, 6 months?! It does seem like far away :( I'm glad to hear some positive news it works. It must be such a relief for the periods to stop (even if they're less painful, anticipating a period is a huge source of anxiety for me because I still expect a lot of pain. Endo is a trauma in itself!). I was advised to stop taking the pill around the second month post-mirena insertion, so yesterday I stopped taking it and just nervously waiting for my period, although I would have much preferred to keep taking the pill and delay my period as long as I can. Regarding the bleeding - luckily it ended around the 4th/5th week post-insertion and excision surgery. I was honestly worrying my socks off if something went wrong because the bleeding and pain was a little too much for my liking.
Thank you so much for the reply btw! 🧡I hope you are doing much better currently and so sorry to hear about the aggressive Endo. Endo is such an unpredictable pest that I really wish there was a life long cure for!

It took about 6 months for the Mirena to finally work for me and for no more periods and only very occasional spotting. I also take continuous birth control. Honestly the Mirena has helped so much. I still have pain but my endo is very aggressive even with suppression therapy. Everyone is different and I know it doesn't work for everybody, but it does take a while to start working, if it's going to work for you. Above all definitely listen to your body and call your doc if things aren't feeling right and there's something wrong. Hope you feel better soon!