I had an excision surgery 5 years ago now and was diagnosed with deep infiltrating stage 4 endo at the time. I also had multiple huge chocolate cysts removed. I didn't have chronic symptoms until what I'm assuming was a cyst popping and causing my body to realize I had all this growth inside me for however long it took to get that bad and I was able to get surgery 8 months after consistent really awful symptoms started. I only knew surgery was needed when my symptoms were leaving me hunched all day and unable to work more than 2 hours without wanting to cry for a break. I was able to work 32 hour weeks for some time after surgery, but I'm now only able to do 24 hours. I'm worried I just am just waiting to be back at that point of begging for time to pass for my next break. And I'm struggling to know how you start advocating for yourself and for another surgery if you only knew what your endo specific symptoms were when they were at basically their worst. That surgery already left me without an ovary/tube and my appendix. So it's worrisome to think waiting longer could leave me waking up with even less. I know 5 years is actually a super long time comparatively, but my symptoms never fully went away and I've struggled with trying to diagnose a handful of other autoimmune/connective tissue type of symptoms throughout the years, but I'm suspecting the actual endo (tissue inflammation/scar tissue tearing/organ pulling/worsened periods) specific pain is returning more often, but it's also different than the symptoms I had right before surgery. My doctors say the goal would be to postpone surgery for as long as possible and I'm honestly really scared of surgery, but at the time, those 8 months were full of pure agony that I didn't have space to be afraid of surgery. I guess my question is, at what point in your own journey did you end up getting surgery again after your first for your returning symptoms and how did you accept you needed surgery again?   submitted by   /u/karcrab [link]   [comments]