Diaphragmatic Endometriosis: Experiences & Treatment Options

Question
Hi Martha,

I'm just wondering if you have experienced diaphragmatic endometriosis or may be able to connect me with someone who has?

I went to a GYN because of heavy bleeding, but during surgery last week my doctor discovered I have Stage IV endo including spots on my diaphragm.  He removed all he found in my pelvic area, but not on my diaphragm.  He said there was to much risk of damage to my heart and lungs.  Now he wants to start me on Lupron injections for six months.  After I have stopped the injections and started my period again, he wants to do another lap surgery to see if there have been any changes.  He is hoping what is left will shrink and that any microscopic areas he didn't see will not have grown.

Does it sound like my doctor is on the right track?  I am very happy with his treatment so far.  I am just wondering if this is serious enough to consider seeing a specialist.

I understand you are not a professional, but this is all new to me.  I don't know of any other women with this condition so you input is valuable to me.

Answer
Hi Tina,
    Very well written letter and I understand your position. Your doctor really does sound like he in on the right track. He's trying to reduce the endo w/o endangering other organs! My gyno did the same thing and he was a specialist! For future reference, if you ever have any questions, the Endo Research Center website is extremely helpful. They can even refer you to doctors in your area.
If upon your next visit to your doctor, after the Lupron treatments, and if you have no improvement, then I would maybe look into a high risk/fertility doctor to help.
    I have heard good and bad things about Lupron...I was on a treatment years ago that is comparable to Lupron, called Danocrine. I had absolutely no problem with it at all. I was so engulfed in endo that anything had to help and it really did. Had no period for 9 months. My endo was at such an advanced stage that extensive bloating and swelling took over my entire abdomen. During an examination, my doctor simply touched a part of my abdomen, internally, and it began to bleed. I was a mess. But the Dancorine helped immensely!
    It sounds like you are in good hands! I wish you luck with the Lupron, it could make a world of difference in how well you feel! Take care of yourself!
Martha