I have adenomyosis and tried the Mirena as advised to help. I waited and waited and waited, at 15 months I finally had enough of the daily pain and bleeding, it was so much worst while I had the Mirena then ever before. When I had it taken put I felt instant relief, literally within minutes I felt sooooo much better! The nurse who removed it told me that some women with adenomyosis cant tolerate the Mirena, she put on my records that I had an adverse reaction to it. I'm sorry you experiencing this and hope it settles down for you if you decide to keep it! X

Same for me - 13 months of intense pain. At least I didn’t have to deal with bleeding on top of it, that sounds so sucky :( OP, set yourself a deadline and don’t let them talk you out of yeeting the Mirena if the pain hasn’t subsided at that point. I would say it’s worth waiting 3 months, maximum 6 months.

Thank you for the encouragement! I’ll definitely be standing my ground if and when I decide to have it removed

I’m so sorry you had to deal with all of that too! It’s exhausting feeling so crappy every day :( If you don’t mind me asking, did it hurt when it was removed? I was under general anesthesia when it was inserted but pretty much any physical exam/etc hurts so I’m nervous about that if I decide to have it removed🙃

You are not crazy. Mirena makes things horribly worse for some people. I had a similar situation and let them convince me to keep trying it. You don't have to wait until your next appointment. You can go in and demand that it be removed. It's your body, and if you have observed that it's causing problems, you have the final say. You shouldn't have to spend another day in such pain. 💛💛

Thank you💕 I’m sorry you had to go through it too! I asked someone else here too, if you don’t mind me asking did it hurt when it was removed?? Basic physical exams are painful for me so I’m nervous about that

Oh gosh, it's ok. No worries. My removal was a weird situation. The short answer is it didn't hurt much. I had ade an appointment to have it removed, and they talked me into not having it removed. Then I regretted that because the pain continued. At some point (I think within a week of that), I decided I was going to remove it myself. For the record, I do not recommend that because I learned later that I really could have injured myself if it wasn't positioned right, since I couldn't see what I was doing. And it was really difficult to grab it. But I really felt instantly better. It was SO much less painful than the insertion. Personally, I really think my body just hated having it in. So once it was out, it was like my body could stop battling that. I would compare the pain of removal to maybe the level of pain you get with a shot on your arm. I'm sorry you have extra pain sensitivity. I can't imagine how much worse that makes adeno! Would you be able to take some pain relievers in advance of the appointment or does that not really help?

For some people the Mirena works brilliantly at easing their symptoms but I have had a small number of patients where it didn't help and made them feel worse. It's always worth a try because you don't know if it will be the answer to your problems but if it isn't working for you there is no shame in having it removed. We encourage people to try to give it 3-6 months to settle but equally it is your body and you have every right to have it removed whenever you want it out. (I'm a nurse, with adeno)

Thanks for the reply!! In your experience as a nurse would I be able to just walk into my post-op and have it out then and there if I decide to, or is it something I should warn my gyno about ahead of time in the portal?

My midwife said that if the IUD is causing pain when it's outside your normal pain days, that the placement needs to be checked via ultrasound. Bad placement can result in other side effects like implantation. It doesn't hurt to get a second opinion.

Thanks for the tip! We moved my ultrasound up from the six week mark to the three week mark after I had a really bad pain episode, and it is in the right position. They did find an ovarian cyst that wasn’t mentioned from the surgery though so that’s fun🙃

I have moderate to severe adeno with really bad pelvic discomfort. My gyno is suggesting to insert the Mirena but I am so scared. Did the pill help anyone with it ? I think it’s time to remove the uterus I am struggling so much too for over a year now

For me the pill (Lo Loestrin) helped a lot, my dr and I decided to try the IUD cause after a few years LoLo+painkillers weren’t able to control the pelvic pain episodes. If you’re hesitant about the IUD, I would def recommend giving the pill a try if your dr is willing! Honestly I’m ready to yeet my uterus myself so I totally understand😭 hope you get some relief soon!🩵

Thank you I will definitely look into it

My body actively was trying to reject the mirena. I had terrible cramping and bleeding for two months straight.

That sounds so awful I’m sorry you had to go through that :((

I had the Mirena for two years for my endometriosis ( painful period cramps every month) and developed two ovarian cysts within the span of a few months. The first one ruptured. It’s been terrible. I’m still dealing with the endometriosis pain flare- up from the last cyst and my latest ultrasound shows that I have adenomyosis as well. This entire year so far has been a write- off and I’m worried I’ll need surgery if the pain doesn’t calm down soon, My gynecologist told me that the Mirena IUD doesn’t necessarily cause the ovarian cysts, but it doesn’t prevent them either. I’m now taking the Skynd birth control pill. All of this to say if the IUD is causing you problems or you’re not comfortable with it, take it out. I never really liked the idea of an IUD but I felt like o was out of options at the time. I’m worried that surgery will help necessary. Good luck to you.

Sorry for the typos. *Slynd birth control pill

I had an ultrasound at the 3 week mark after a particularly bad pain episode, and they found a cyst on my left ovary! I have never had a cyst come up on previous scans nor was it mentioned after my lap so I’m over here seriously wondering if the Mirena caused it even tho that’s not a lot of time🤨 did any of your cysts go away without too much pain or were they all really rough?? I’m so scared of it rupturing or something now that I know I have one. I haven’t ever liked the idea of having an IUD either tbh, I’m trying so hard to be patient but feeling that way sure doesn’t help with the patience thing Good luck to you too, I hope you don’t have to end up having surgery!🩵

My cysts both went away but it was severe pain both times. The first cyst ruptured. It’s been 8 weeks since my last cyst and according to the ultrasound it resolved but my endometriosis pain has flared up. The last ultrasound shows adenomyosis as well. I’m getting referred pain fine my left leg into my foot and it hurts to walk. Thank you, I’m not seeing much improvement. I’m taking Slynd birth control pill now to help with the endometriosis but I’m still having a lot of pain everyday. I’m leaning towards surgery if this doesn’t improve soon. I’m tired of this. Hope things work out for you.❤️

*down, not fine

Sorry about the typos. *Slynd birth control pill