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Endo issues

Posted , 4 users are following.

carrie64173
carrie64173

Diagnosed with endo at 26 now 41 ...said I had stage 4 everything all stuck together frozen pelvis ....anyone else similar?

0 likes, 11 replies

11 Replies

  • aitarg35939
    aitarg35939 carrie64173

    Posted

    If you are asking if you could still have it, or if it could have returned, then I am sorry to say it's possible. I had a total hysterectomy at 27. At 54, it came back and took 6-8" of colon. Ten yrs later and i"m beginning to fear it might be coming back. There are others here who've also had it come back after total hysterectomies.

    What treatments were done when you were 26?

    • carrie64173
      carrie64173 aitarg35939

      Posted

      They did a few laps and I am on cont birth control to not get my period in hopes of trying to control symptoms although still have pain from implants 
  • luluwho
    luluwho carrie64173

    Posted

    Yes I understand , it has moved into my lungs 
    • mel2016
      mel2016 luluwho

      Posted

      Hi luluwho, What’s the treatment for it then ? 
    • carrie64173
      carrie64173 luluwho

      Posted

      I am so sorry this disease is terrible and no one really knows much about it from my findings .....how did they find it moved to your lungs
    • luluwho
      luluwho carrie64173

      Posted

      After having  internal bleeding and shortness of breath,, they a lot of CT and X-ray,, and seeing  pulmonology doctor,,
  • mel2016
    mel2016 carrie64173

    Posted

    Hi carrie, I have the same issues. I am 36 and have no kids. Tried a lot of fertility treatments but none worked and made my Endo even worst. My doc said I have stage 4 endometriosis and frozen pelvis.  

    • carrie64173
      carrie64173 mel2016

      Posted

      Thanks for your response Mel ....it’s such a heartbreaking disease but I’m so glad I found this forum and I am not alone.....I’m on continuous birth control so I don’t get my cycle but still have pain from the implants
    • mel2016
      mel2016 carrie64173

      Posted

      Oh is it okie to do that ? Taking birth control pills continuesly ? Recently my doc has put me on birth control pill as I am waiting for my next surgery. I take 3 packs back to back and leave for 7 days. Periods are hell even with birth control pills. 
    • carrie64173
      carrie64173 mel2016

      Posted

      I’ve been on them cont for 10 years it’s how they control my symptoms it works for me
  • luluwho
    luluwho carrie64173

    Posted

    There really no real treatment and Unfortunately I cannot take birth control because I have a history of blood clot’s
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