Adenomyosis and Endometriosis

[Adenomyosisisntyourosis]

I was given a dual diagnosis of Endo and Adenomyosis 6 years ago after suffering from horrible periods (both in terms of pain and bleeding) for my entire adult life. I’ve had surgery to remove an ovarian cyst but more recently the trust I use for healthcare has declined to treat them and I had to stay at home whilst one ruptured. They refused to give me any further treatment and told me they feel Mirena coil is appropriate for my needs. I have had recurring thrush and BV since having it put it, I bleed 14 days in 30 and have depressive symptoms due to the coil.

My current issue is that I have had to leave my profession as an HCP as I was frequently bleeding through my uniforms in front of patients and was frequently sent home. This added to the depression and I now have anxiety and depression. I was lucky to get an office job working two days a week and at first they were happy for me to WFH, however, they would now like me in the office one day a week. I went in this week and bleed through a maxi pad and period pants and destroyed an office chair. Has anyone been through similar? I’m really struggling at the moment.
NB cannot wear tampons/ moon up due to previous TSS

Hi yes 100% of your post is exactly how my life was (is) I had to eventually give up work as it’s gotten so bad. I spend most of my days in bed, either in agony, completely wrecked from lack of iron/foliage etc or because there’s no point moving more than a meter away from the bathroom.

I refused to have the coil fitted on several occasions because of stories like this. It seems to me that currently GPs don’t want to help genuine people who are suffering. They push and push for the coil as some miracle answer when it really isn’t.

Right now I’ve been discharged because I won’t take the coil or attend any further appointments with that particular doctor. So I suffer in silence and i am saving upto go privately to hopefully have a resolution. In the meantime I’ve been on tranamexic acid and mefenamic acid which help me get through the pain for a few days. I also have cysts that burst every now and again and I’ve gotten so used to the pain and the signs that I just ignore it it until it pops and goes away.

Hi, I had the same, and I felt life wasn’t worth living. Everyday was filled with pain. I ended up going private and getting a full hysterectomy, ovaries, tubes, womb and cervix. I now have no pain, no periods, etc, however I am now struggling with menopause but hopefully once I have hrt sorted I will be back to my normal self. I wish I had a hysterectomy years ago!

@mushroommummy I’ve taken Tranexamic acid but it seems to make me pass clots instead of blood which is equally painful. I wish I’d never had the coil in as no one will take it out as they argue it is “treating” me.
@Jakc it’s really sad that I’m actually jealous of your hysterectomy! I’m glad for your sake you had it. I’m considering selling my house to fund mine. People keep telling me to work more to fund it but I’m so tired from the anaemia and depressed from the coil that I can only manage two days max. I struggle to walk short distances now.