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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 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 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)

    2. kind of same. But with many ultra sounds done to me and them coming back as "normal" my GYN thinks I just suffer from pelvic floor issues that make me clenched all the time and that is why I'm having pain. But I'm at the point where my opioid isn't working anymore. And she does not want to let me have the surgery because she says "you're too young". I'm 23. Been like this since I can remember and it's just gotten worse. 🙁

  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. just wanted to chime in here! I definitely experienced this leg pain. It would sometimes stop me in my tracks, and I would have to just sit down and let the pain pass. One of my last surgeries certainly helped with that relief. It turned out it was both endometriosis and I had hernias that were causing the leg pain. I do hope you can find some answers and relief with your surgery. Keep us posted if you can. Thinking of you and sending good thoughts. -Kimberli (advocate)

    2. Hi, I’m supposed to have my exploratory surgery soon, and I have all kinds of weird symptoms, including the leg pain you guys are talking about. All symptom checkers say that my symptoms sound like a herniated disc in my lumbar- but I’m 24 and I work in a very physically easy job, I’m not out here slipping discs.

      Mine started out as a weird feeling similar to when your legs burn from running too hard, but I was seated at the time. I’d had mild weakness and just a weird feeling in my legs for the week before that. But when I got up to walk, pain radiated into my right leg from my back, and it came in waves. At it’s worst I couldn’t walk because the pain was too sharp. I’m trying to find more testimonials of people whose doctors found endo in weird places, because my research has just turned up lots of rare presentations of it, and there’s no way I have it in that many rare places at 24, without it showing up on any imaging in any way… right?

      Hoping for some good resources for first-person stories of this rare stuff

  4. - 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)

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