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How endo affects diff parts of body

I’m new here. I am beginning to think endo is the culprit to almost every medical issue I have been experiencing. I was diagnosed but no one explained how endo could affect so much more of the body. Which leads me to bring up this discussion.

What different parts of your body has endo affected? Have you experienced unusual symptoms or medical comorbidities? Thanks!

  1. Thank you for this question and for being here. So sorry you were not given more information or guidance after your diagnosis. How frustrating. That is sort of what happened to be as well. Thankful for this community though, as it has been the most helpful!

    So, endometriosis can be found on every single organ/part in the body. Isn't that crazy? Of course, not everyone will experience it everywhere. For me personally, endometriosis has been on my appendix (appendix was removed last year), my ureters, uterus, ovaries, bladder and close to my bowels. I suspect it is elsewhere right now but working on trying to find myself a new doctor to confirm.

    I think most of my symptoms I experience are pretty on point with what many other talk about, fatigue, pain, I do get a lot of rectum pain and spasms, which makes me believe I have endo on my rectum. A lot of ovary pain, leg pain, pelvic pain, bloat/inflammation, nausea.

    Hope this helps a bit <3 Feel free to ask any questions you have! -Kimberli (team member)

    1. I'm so sorry to hear you're going through all of this, and I'm so glad you're reaching out to this community. After reading everything you wrote, I would highly suggest getting a second opinion if you're in an area where you can seek out another practitioner. I have had severe fatigue from endo. In fact, I think it was the main contributor to my fatigue. My last surgery was quite successful and many of my symptoms are gone or greatly diminished. I had my ovaries and tubes removed. I had recurring pain in my pelvis where my ovaries were and it was because I had recurring endomtriomas. For a practitioner to tell you that pain in those areas is normal is a big red flag to me. Especially with you background with gastro issues, I would look for someone who has expertise with endo. I know for myself that my inflammation would fluctuate during the month depending on my estrogen levels (my body does not like estrogen and it would flare my other conditions).
      You may well benefit from a hysterectomy, but before you go that route I'd try to find another doctor to weigh in. You want to make sure you have the best information possible before making a decision like that. Please keep us posted! ~Katrina, Advocate

    2. Ouch! I am flinching at the sound of this because it is the same exact pain I have too, on the same exact side. I know the cysts on my right side definitely play a big part into this pain. However, I feel lately, endometriosis has a lot to do with it as well. I have an appointment in October and hope to get some answers. I know this isn't always an easy thing to just go do, but, if your doctor is not being helpful, I would definitely see if you can seek out a second opinion, third or fourth even if need be! I am so sorry you are dealing with this pain and not being taken seriously or treated. Pain is not normal. I don't care what any doctor says! You should not be feeling that 🙁 Keep fighting and don't give up <3 -Kimberli (team member)

  2. Thank you so much Kimberli. I will definitely look up Nancy’s Nook today!

    I always feel supported when reading anything here. I’ve never wanted to comment so much until reading the post about places endometriosis can show up. Thank you for being a supportive community. You guys soothe like a hot water bottle and/or a warm cup of tea. 🥰

    I appreciate you all. Thank you!

    1. We are so glad you feel this way! Please always know we are here for you and will do our best to continue to soothe like a hot water/bottle warm cup of tea! Love that description by the way! <3 -Kimberli (team member)

  3. I'm so sorry to hear that you're having trouble with that. Endometriomas can affect your ovaries, fallopian tubes, and even the tissue that lines your pelvis. Endometrium-like tissue is rarely found outside of the area where the pelvic organs are. I had to deal with these problems, and they make me crazy because they caused me a lot of pain. But thank God, I'm all right now.

    1. thank you for commenting and being here for our community members. So sorry you had to deal with similar issues and such pain. But so happy to hear you are doing all right now! May I ask, what seemed to be the best course of treatment that helped you find this relief? I am dealing with this horrible right sided ovary pain, and I am in the boat of figuring out if it is, cysts, endometriomas, or just endometriosis starting to grow and take over. -Kimberli (team member)

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