caret icon Back to all discussions

Where Has Endometriosis Been Found in Your Body?

Every day we learn more and more about how endometriosis can affect our body and where it can travel to.

There have been accounts of endometriosis being found in so many different parts of the body.

We want to know, where has endometriosis been found in your body?

  1. When I learned that Endo can be almost anywhere, I was shocked. It reminds me of how cancer can spread throughout the whole body.

    Thankfully, my Endo has been just in the abdomen. My last surgery my GYN made sure that there wasn't any in my chest.

    1. I was also shocked when I learned that. I had always assumed it would only be in/on your reproductive organs. But I was very wrong. I’m so glad that your dr checked every where to be safe!!

      Amber ( team moderator)

    2. I was also so shocked! It is comforting knowing you have a great doctor who checked everywhere for you <3 I know that is hard to come across. -Kimberli (advocate)

  2. Mine was in my appendix area before it was removed but I have been told recently it’s not in my bladder or rectal area so shouldn’t be giving me complications since my appendix has been removed but I have all the endometriosis symptoms still n have been diagnosed with pelvic floor and wall tightening sometimes I feel no one wants to help me with my pain

    1. I'm so sorry to hear you're in that position, Danni. Were you told this after a surgery or imaging? Some endo is very difficult to see in imaging. For instance, I had a node near my sacral nerve that was only discovered during surgery. Are you able to explore a second opinion? It is so frustrating that doctors often seem to want to push us off instead of investigating all the possible avenues to help us. ~Katrina, Advocate

    2. I am so sorry. I feel this frustration as I am dealing with this right now. My last surgery they removed my appendix too, but I definitely do not feel any better and I am still experiencing those same symptoms I was experiencing beforehand, maybe even worse now. I definitely agree with Katrina, if it is possible to get another opinion, absolutely do that. I know my last doctor most likely missed a lot of endometriosis in there because he didn't 100% know what he was looking for, because it can be difficult to see. So, I have a new doctor who definitely seems way more qualified, and I am hoping for the best! I am hoping for the best for you too that you can find some more answers and relief <3 -Kimberli (advocate)

  3. Endo was found near my sacral nerve on my left side, as well as on my rectum, uterus, fallopian tubes, ovaries (as well as large endometriomas), sacral ligaments, and pelvic sidewall. Sometimes I suspect it's in my abdomen and back as well, but those areas only hurt intermittently so they are tolerable for now. ~Katrina, Advocate

    1. - Well, we'll know more in a few months when I get the surgery. I know it's fused my bowel to my uterus, from a previous surgery. I think it might be responsible for the phyllodes tumor that took my right breast. It's scary to think about how many places it might have travelled in my body, but they're going to take a good look, all while they remove my uterus, my fallopian tubes, my appendix, and probably part of my bowels. I'm a little angry that I had to figure this out myself, but I have a therapist for that part.

      1. hi there! wanted to just check in on you and see how everything has been going for you! Hope well <3 -Kimberli (advocate)

      2. Hi there! Just wanted to swing on by and see how you have been doing lately! Hope well <3 -Kimberli (advocate)

    or create an account to reply.