Newly diagnosed with DIE (and adeno)
Hello everyone, I hope you're having a nice day today and that you're not in pain <3
For the past 8 years (that is, since I got my first period) (I recently turned 21), I’ve been in a lot of pain, and I was often told that there was nothing wrong with me, even after several ultrasounds. Then, a couple of months ago, after yet another ultrasound, I was diagnosed with adenomyosis. Then, yesterday, after an MRI, I was diagnosed with DIE (deep infiltrating endometriosis) with two adhesions (bladder and intestines), even though I was often told that doctors "saw no signs of endometriosis", yet every month I found myself (and still find myself) doubled over in pain, almost fainting (with other debilitating symptoms too).
Now I finally know what I have, but I know the journey to treat all of this won’t be easy. I’ve already tried several birth control pills, and unfortunately each one gave me terrible side effects that, paradoxically, were worse, and were even more debilitating. Despite this, doctors seem to keep pushing for the pill, and it feels like talking to a wall.
If you’re experiencing awful symptoms, you have the right to be taken seriously by doctors and to know the cause of your pain (and all your other symptoms)! If you still haven’t received a diagnosis, keep fighting! Feeling this bad isn’t normal, and it’s not right either. Your pain is real.
And if doctors always brush you off with alternatives that you know aren't good for you, please find better doctors.
To anyone in a similar situation, hang in there—I’m sending you positive thoughts!
Hi
! I was diagnosed with Stage 4 Endometriosis 5 years ago and I’ve gone through the same situation with finding a good medication. I’ve been taking Myfembree for about 2 years and it’s pretty good. The side effects are minimal and I’m not in as much pain as with other medications. I don’t know if you’ve tried it but it wouldn’t hurt to do some research on it to see if it helps. Best regards! Thank you! I've also been suggested Myfembree but for now I'm trying with dienogest first (not a great experience so far). As always I'm scared/worried about the side effects. I'm glad your side effects are minimal! Right now I'm on dienogest and I'd say the side effects are not minimal, at all (unfortunately). Thank you, and I'll definitely do more research on Myfembree.
Best regards!
Reading this reminded me so much of my own experience. For years I was told everything looked normal, yet the pain was anything but normal. Getting a diagnosis didn't magically fix things, but finally having an explanation was a huge relief. I'm really glad you kept pushing for answers and didn't let yourself be dismissed.
I feel you! For years I thought I was just unlucky and got more painful periods, but then I slowly realized it was not normal at all. And you're right, a diagnosis doesn't magically fix anything, but it's more of a starting point in the long journey with this disease. Thank you for your kind words!
I remember how frustrating it felt to finally get answers after years of being told nothing was wrong. Getting a diagnosis can bring some relief, but it also comes with a lot of emotions because you realise how long you were dealing with untreated pain. I really hope you find doctors who listen to you and a treatment plan that actually works for your body.
I totally understand, and yes, a diagnosis comes with a lot of emotions that I'm still processing. Also, after receiving it, you really face the reality of things and realize that you have a chronic condition with which you'll have to deal for many years to come. But it's the first step to acknowledge your situation and act accordingly. I've found better doctors and I feel more taken care of at the moment, so I'm pretty happy about this. Thank you!
