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A MyEndometriosisTeam Member asked a question 💭
Tanilba Bay, Australia

My gynaecologist has advised me that my endo is stage 4 with significant growth infiltrating my bowel. She has told me that she does not think surgery is a good idea as they will need to also remove part of my bowel. She has advised that at current the Mirena is my only viable treatment option
I am horrified as hormonal birth control has always wreaked havoc on my body (weight gain, mood swings, depression)
I’ve never tried the Mirena but I’m terrified of the side effects.
I had the copper… read more

November 22, 2023
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Answer Summary

Members shared mixed experiences when discussing Mirena as a treatment option for stage 4 endometriosis with bowel involvement, with some... Read more

Members shared mixed experiences when discussing Mirena as a treatment option for stage 4 endometriosis with bowel involvement, with some finding relief from pain and periods without the mood swings typical of other hormonal birth control, while others experienced weight gain, depression, hormonal acne, and persistent bleeding that led them to remove it. Several members emphasized that Mirena keeps hormones localized rather than circulating through the bloodstream, which can reduce side effects like migraines, though individual responses varied widely. A recurring theme was the importance of seeking care from a vetted endometriosis excision specialist and collaborating with both gynecological and gastrointestinal doctors to find a comprehensive treatment plan rather than relying solely on hormonal management.

A MyEndometriosisTeam Member

I had the Mirena for 6 months and had heavy periods and pain for the whole 6 months till I begged the doctor to remove it.
I also never had much facial hair but after the Mirena I developed visible facial fuzz.
I would not recommend Mirena to anybody.
Be that as it may, I reacted to most birth control methods badly with heavy bleeding.

November 29, 2023
A MyEndometriosisTeam Member

Oh my GOSH! You absolutely need excision with a vetted endometriosis EXCISION specialist. I don't know where you are.

I had one of the worst cases of STAGE IV DIE ever seen to the point it was almost inoperable. Had I not had surgery, I wouldn't be here today.

I promise your doctor hasn't a CLUE how to treat endo except with Mirena and other drugs.

November 24, 2023
A MyEndometriosisTeam Member

I have had a good experience with the mirena. I like you, tried so many types of birth control pills that I lost count and they all made me crazy and made my migraines worse. I was advised against the copper by more than on medical professional because that is known to cause more cramping.

I have no periods on the mirena and it doesn't make me crazy. The doctor told me it works be keeping the hormones local to the area it's inserted in, rather than passing through the blood steam like the rest. My neurologist told me that studies show it's not likely to cause migraines like the pill does. It's no fun to have put in, but it's worked so well for me, that I actually fear removing it.

Good luck.

November 22, 2023
A MyEndometriosisTeam Member

I had the Mirena for over a year at the age of 21. It stopped my periods and most cramps, but caused depression and hormonal acne. Got it removed earlier this year.

November 28, 2023 (edited)
A MyEndometriosisTeam Member

I'd inquire about referral to a GI specialist and ask that GYNE and GI collaborate on your case to find you a workable solution.

December 12, 2023

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