I’m genuinely curious how many people here were told their endo was “under control” because they were on birth control, dienogest, Mirena etc… but later found out the disease had still progressed anyway. I keep seeing very mixed experiences with hormonal management and would really like hearing from people who had surgery/imaging later that showed worsening despite treatment. Did symptoms always match progression for you or not really?
Yes 😕 This was genuinely confusing for me too because I assumed hormonal treatment automatically meant the endo was “controlled.” But later I realised symptoms and progression dont always match properly at all, and some women still discover worsening disease despite being on meds for years.
Yes and honestly that was one of the most confusing parts for me 😞 I kept thinking if I was on hormonal treatment then things should automatically stay “controlled” but symptoms and inflammation can still progress for some people despite suppression. That disconnect between being “treated” and still feeling worse mentally and physically can be really frustrating honestly.
Honestly this is one of the hardest things about endo mentally 😞 You go on hormonal treatment hoping things are finally being controlled and then sometimes symptoms still keep progressing anyway. It can make you feel SO defeated when you realize suppression doesn’t always mean the disease has completely stopped in the background.
I’ve been on hormonal treatment for my endometriosis and honestly I was so worried it wouldn’t work 😔 But over time I still felt flare-ups and some progression. It was frustrating and scary but it made me pay even more attention to my body!