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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. 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. 🙁

    2. friedeggsss ask for hysteroscope this will show everything ultrasound don't show endometriosis

  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. 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

    2. Hello all. I joined this community today. I have suffered with endometriosis and complex gynae problems for more than 20 years now (initially undiagnosed and misdiagnosed). My first endosurgery found it had attached onto 5 different organs in my body. To be honest, the surgery for me was barbaric and there was no follow up care. I have felt dreadfully alone and unsupported by NHS here in NI. Like many of you, I have thee weirdest symptoms. Pulling pain round lower back and sacrum, tingling legs and lower back, weakness in legs, nausea and a feeling of "someone forgetting to put money in the metre" ... Literally the worst brain fog and fatigue. When I have bad flair ups, it affects me physically and emotionally. My anxiety sky rockets and I feel depressed. Its frightening and frankly there just isnt the support here in Northern Ireland for all the women going through this. I'm a lover of sport, have been all my life but sadly this disease has stripped me of my ability to do some sports because exertion causes flair ups (running seems to really aggrivate mine).
      I'm hoping for some words of wisdom and some support. Im currently going through a flair up and the past 3 weeks has been really difficult for me.

  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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