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Return Of Endometriosis After Extensive Resection & Mirena
A MyEndometriosisTeam Member asked a question 💭

Hi there

I am 40 years old and 6 weeks ago I had my 4th surgery for severe stage IV endometriosis. I had to travel to see an endometriosis excision specialist after my previous surgery 10 months prior, the endo came back within 3 months of surgery.

The endometriosis was very severe and everything was stuck together and there was large bilateral endometriomas and rectal involement. My specialist put in a Mirena after the surgery and I have been bleeding heavily for weeks and am still in pain… read more

posted March 1, 2019
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A MyEndometriosisTeam Member

Hi Kiddie, I am really struggling with the Mirena, I am having 8 - 10 day periods, very heavy. I will give it two more months and if it continues I will have it taken out. It is also affecting my moods, my hormones are all over the place and I am really struggling to manage. I will definitely read your story, I think a hysterectomy will be the next step, that was suggested this time, but as I haven’t had any children wanted to try to preserve my fertility and asked the surgeon not to remove anything, however, I can’t go on like this.

posted March 2, 2019
A MyEndometriosisTeam Member

Thanks for the links Stacey, I had my 6 week post follow up appointment with the surgeon last week and he said the Mirena won’t stop the endo from growing back, it will just help with pain and to lighten the bleeding, and it takes time for things to settle down. He did say it won’t stop the Endometrioma cysts from reoccurring and that is what I am so anxious about, they are so painful when they rupture and it will mean yet another surgery.
I had surgery last year also in March and by July had large bilateral endometriomas again, at which point I was told I would have to travel to Brisbane or Sydney to see a specialist as my disease is complex and requires an endo specialist and multi disciplinary team to do the surgery. The surgery was very expensive, even with top level private health cover I was out of pocket thousands of dollars and am just petrified it is going to come back again. I have seen my local specialist and she has put me on Ralovera to try and stop the bleeding, so hopefully this willl work. I am in so much pain and working full time and am struggling, I don’t know how much more I can take.

posted March 2, 2019 (edited)

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