Adenomyosis pain

[Castillo36]

Hi everyone I’m new to this site but I am here for support and for advice and honestly to vent. I’m 36 have had endometriosis when I was 21 and now adenomyosis fibroids chronic pain but I can’t have hysterectomy til I have ins again. You can only vent to your family for so long until they are just as depressed as u are. So I’m asking for anyone to share my story with and go through this together

[Desperateforrelief]

I'm so sorry!! Adenomyosis is very painful. I had it when I was young (hysterectomy because of it at 28). I am in pain now from a TOT mesh sling that shrank. The mesh is gone, but left behind a torrent of problems. I had 3 small kids when I was dealing with adenomyosis and cystic ovaries. I sat with the heating pad all the time. I couldn't stand for more than 10 mins about 10 days around my period. I know very well how family can't take the complaining or even just the facts. It depresses them because they want us well and there is nothing they can do about it. It is hard to fight depression with pain because we can't get a respite from it. So vent away!!

[Castillo36 in reply to Desperateforrelief]

Thank you so much for your story. I have felt so alone and now I’m trying to get the surgery without in’s I just can’t take the pain anymore and I can’t do anything with my 9 yr old

[Desperateforrelief in reply to Castillo36]

That's why I got the surgery. I couldn't properly take care of my kids. I'm so sorry you don't have insurance. Maybe you could try a go fund me page. I would give to it. Also, I don't know your age, but if you have cystic ovaries, get them out at same time. They went crazy - worse than before hysterectomy. I ended up having 2 extra surgeries because they were worried about hormones. Legitimate concern. But I did much better with hormone replacement therapy. I had to fight with the doctors for it. The study was based on a verge 65 year olds, I was in my 30's.

[Castillo36 in reply to Desperateforrelief]

Yea hopefully my husband gets the ins soon from his company it just sucks everyday. Btw I’m 36 had right ovary removed at 21 for endometriosis. Found out now that I have the adenomyosis all over the uterus a fibroid on top of uterus and a grey mass the dr doesn’t know what it is. Everything is coming out for for sure will be asking for hormone replacement therapy 💯. I appreciate all of the support this is a great place to talk aboot your issues and not be judged