Hello everyone, I have been diagnosed with diffuse and focal adenomyosis as well as deep endometriosis with adhesions in the bladder and uterosacral ligaments. The MDT team is going to meet to tell me what type of surgery is best for me (I am not sure I really want surgery). The Endometriosis Clinic has recommended that I put the Mirena Coil in the meantime to help with this. Is anyone using or has used the Mirena Coil for these reasons and could you please share your experience with me?
Thank you very much in advance.
Xxx
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Naladog
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Surgery made me worse wish I never had it but the coil I find it great stops my bleeding all together and dims my pain a little but my situation is a mess.
The coil was a godsend in the sense it stopped my periods. However, I still had pain. It was also referred to as a “weedkiller” when it was put in but it certainly didn’t stop any progression of Endo. My original one took a while to settle but my recent one I’m unfortunately having a fair amount of issues. They aren’t really recommended for those with Adeno but I just needed something to stop my bleeding
Iam on mirena for 5 month, my endometriosis went worse, and endometrioma cysts went bigger. And on top I ended up having different type of cysts from mirena. And iam constantly bleeding for 5 month and have pain like periods. Mirena didnt worked for me. So I booked to take mirena out, had enough of it.
Thank you for sharing your experience svetlanam . I thought the Mirena could only improve the situation, even if it wasn't a definitive method for some cases. I hope you feel better now. Honestly, with your comments I don't know if it's worth trying something or waiting for the menopause. 😣
Everyone is different. Some women can tolerate synthetic progestin in the coil and for others it makes everything worse. I suggest you try it and monitor your physical and mental response closely over the coming months. For many of us, the coil won't sit in our cervix (they couldn't fit me with one even in surgery) so give it a shot as it could make your life a lot better.
Sunset-lady Thank you for your reassuring words. I honestly don't know what to do. I am having irregular periods lately and post menopausal hormones according to some blood tests, so I am hesitating whether to wait for the menopause or whether it would be better to consider Mirena Coil or some hormonal treatment of bioidentical hormones.
My understanding was that if the Mirena can be placed properly it is great for adenomyosis and Endometriosis depends on the growths and adhesions that are already there. I will discuss all this with the Endometriosis especialists at the appointment on Saturday. Thank you very much for sharing this with me.
Waiting for menopause can be complex when you have endometriosis as the fluctuating estrogen levels often trigger flare ups. I ended up with fibroids (which tend to go hand in hand with endometriosis and adenomyosis). I believe thus was due to too high levels of estrogen in my HRT. However my peri menopause were so debilitating that I had no choice but to go on HRT and I didn't know I had endometriosis until I was 50 and a year ago today they attempted a hysterectomy and found everything fused due to endometriosis. It's a life long complex disease unfortunately and it needs careful management- unfortunately many doctors just don't have the knowledge or expertise to help us. Talk to your team and I wish you lots of luck xx
I have found the Mirena quite helpful in terms of reducing bleeding and also turning the volume down on the pain. It has become less useful as my adenomyosis has progressed but I dread to think what it would be like if I didn’t have it at all! I’ve had it for ten years (on my third replacement) and the memories of my periods and pain before have made me keep on with the Mirena despite the side effects (occasional migraines, irregular cycles and occasional rage (!)).
Whoosh451 Thank you for sharing your experience. I had migraines with aura in 2014 and needed a strong treatment. After the treatment, and I guess the magnesium supplements and a much more relaxed life, they have almost gone. I would not like them to return. I have never used any hormonal treatment or replacement. My symptoms (very long and heavy periods, abdominal pain, bloating, gas, and gastrointestinal issues like diarrhea, huge clots; I have had them for at least more than 10 years...but as usual my gynecologists didn't see it happening). It has ruined my professional life, so I would not like it to be worse, honestly. I prefer to stay as I am if it can't improve. I hope they are skilled specialists and can advise me properly. 🙏
I would like to share my experience with my recent visit to the Endometriosis clinic at Addenbrooke's Hospital yesterday morning.
The consultant I met with was very pleasant, however, the appointment itself was scheduled in error. This is the second time this has occurred. 😔The purpose of the meeting was to assess my progress with the Mirena Coil. However, despite the fact that the appointment was scheduled more than four months ago by the same Consultant, I have yet to be contacted to have it inserted.🤦♀️
Upon learning of this, the Consultant expressed surprise and instructed me to make every effort to be seen within the next two weeks. However, I am skeptical that this will occur.
I am also patiently awaiting the MDT meeting and the subsequent communication, which has been ongoing since March. The consultant advised me that the process may take approximately 9 months to complete.
I expressed my candid opinion that women's health is severely undervalued.🤷♀️
I noticed that the clinic was empty when I arrived, with only my husband and I present. This is consistent with my previous experiences at the clinic. Additionally, I observed that most of the Endometriosis Consultants were male, while the majority of the nurses were female. While I have no objections to this, I find it intriguing that there is a significant gender disparity in these positions.
Furthermore, I am concerned about the long waiting lists, lack of professionals, resources, and funding, which are compounded by the occurrence of erroneous appointments.
In light of these issues, I would like to know if there exists appropriate channels for expressing our concerns. Is there an active Endometriosis UK association that is currently advocating for improved attention and services or only PALPS?
Hi. I have endo and adeno with one adhesion to intestine.
I was offered the Mirena coil - in fact my gynae pushed it really hard - but I went with dienogest (progesterone pill) instead. I chose it because trials show very good results in reducing size and stopping growth of endo.
Been on it 3 months. Still getting period and daily light bleeding. Pain however instantly reduced to a third of what it was 3 months ago. Perhaps an option to discusd? Good luck with your treatment
I'd rather try Mirena because it is something more localized than take pills that go into the bloodstream or can cause more systemic side effects. But I really don't know, and I'm so glad it is helping you.xxx.
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