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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'm glad your surgeon was able to look in your chest and make sure it wasn't there! ~Katrina, Advocate

    2. 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. 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

  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. Oh gosh, I suppose lucky you caught it on time. Kudos to you for figuring it out yourself though - hope you can feel more pride instead of anger. 😉 Were you put on a variety of contraceptives/depo shot etc before you got to this stage? With our sci-fi brains nothing is impossible...I somethimes wonder if the contraceptives we are given to stop the growths in the the womb...over time grow outside the womb and on other organs - was there really enough long term testing for the long term side effects..

      2. I am in Ireland - Hello from over here! Yes, I am also researching like mad for more natural ways to take control of this body/engine!!! Nobody listens here and tries to give you more pain relief. I try the fasting a few days a week from about midnight to 7pm. I thought it would be difficult but I drink lots of peppermint and rooibos tea - sometimes chamomile. Are you a tea drinker? - some have great benefits. From what I see on TV it is more coffee than tea over your way 😉

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