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Endometriosis in right lung

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carolyn22517
carolyn22517

Hi Ladies,

I have some questions about my pulmonary endometriosis.

Long story short I have had it since I was seventeen, I am now 33, was only diagnosed in August of this year.

After they found the nodules in my lung they wanted to do a biopsy to make sure that they weren't cancerous so I had the biopsy in September and the parts that they removed tested positive for endometriosis in my lung and on my diaphragm.

My problem is that my surgeon says that he can't remove it all from my lung because there is so much of it I would be left with no lung function.

I really do not want to go on the Lupron or have my ovaries removed. I'm not sure that I'm done with having children and because I have depression I don't want to do anything that will make my hormones go crazy.

I have read that there is an option of using a laser to burn off the endo. My doctor said that this is not a good option but hasn't explained to me why. Have any of you had this done in your lung??

I'm desperate to get this resolved, I used to only get the pain right before my period but now I'm getting it every few weeks and it is disrupting my life very badly.

Thanks for any ideas you can give me!!

0 likes, 4 replies

4 Replies

  • katkins0
    katkins0 carolyn22517

    Posted

    The doctor should have given you a rationale for his decision. It might be because the risks outweigh the benefits. With laser treatment they could hit something they don't want to, causing more harm than good.

    If you are not currently actively trying for a baby, then maybe the coil or the pill for now to ease the pain and symptoms until you decide to start trying. It is an awful thing to have. I also suffered with it. But mine wasn't in the lung. I can't imagine it's nice at all for you.

    Maybe just go back to the doctors to go through your options. They cannot just ignore you're suffering. Hope you get the answers you want soon.

    • carolyn22517
      carolyn22517 katkins0

      Posted

      Thank you for the reply. I actually have been on the continuos birth control pill for the past 8 years which helped my symptoms but for some reason in July this year it just stopped working. He actually did email me again this evening and said that Radio Frequency Ablation could be an option. I'm going to look into it and hope like crazy that this will be s cure for me!
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