Is lung endometriosis a rare disease?

Hello! Yes, lung endometriosis is a rare disease. Lung endometriosis is also known as thoracic endometriosis and there are two types: pleural endometriosis (the lining of the lung) and parenchymal endometriosis (the lung itself). Most of lung endometriosis cases occur in the pleura rather than the lung itself (about 5:1). Diagnosis of lung endometriosis is difficult and treatment often includes medical suppression of the endometriosis or surgery.

National Institutes of Health Office of Rare Diseases (ORD) characterizes a rare or orphan disease as a disease or condition that affects fewer than 200,000 persons. So yes it is rare, but lung endometriosis leading to Catamenial pneumothorax is under recognized and under diagnosed. The first reported cased of this disease were in the 1930’s. I have received over 40 letters from women around the world in a one-year period with lung endometriosis and none of the women including myself are written up in the literature. So a definite calculation of worldwide numbers is currently unknown.
Author: Living With Lung and Colon Endometriosis: Catamenial Pneumothorax
http://www.catamenialpneumothorax.org/History.html

I am 38 years old. When I was eleven, I thought I injured the area under my armpit doing the flexed arm hang in gym. My parents took me to the doctor and two specialists said that I popped the blood vessals under my arm and that it was really just cosmetic so to not worry about it unless it bothered me. In the last year, the area swells up the week before and during my period and is extremely painful. When my period is over the swelling goes back down and it is not painful. My physician referred me to a vein specialist. I am having a biopsy on the area on Wednesday because this doctor thinks my symptoms sound like a rare form of endometriosis where the tissue deposits in other areas of the body. It is his opinion that the flex arm hang was a fluke. I am trying to find information about this condition and what it means to me. I have three healthy children and no plans for any more. What if it is endometriosis? What does that mean and what is the treatment?

I have pulmonary endometriosis. It took about 4 years of more pulmonary testing and diagnostics, before a very smart female anesthesiologist, who was preparing to give me a nerve block, 7 injections to my back, when she asked if I ever hemoptysis during my period. I really couldn't answer definitively. After the nerve block, I went back to the ED. (I am an RN. I would have these blocks, a few x per month)I called one of my Radiology Techs to ask about my chest films. Sure enough, every time that I would have the hemoptysis and terrible pain, my Doc would order a chest film. The sweetest medical librarian, she called when it seemed that every Doc on staff was calling for info on Pulmonary Endometriosis. She knew, just like ever other person in the hospital. Sick Nurses have a lot of friends, in hospitals. On every consent form, you are asked, if still of child bearing age, when was your last period. On every form, in my writng and with my signature, was the note, within 2 day of onset. I was started, 1989 on Lupron x 5 years, which caused severe Osteoporosis. At 36, I had my first fractures, 9 fx's of the thoracic vertebrae. I am 55 now, and I have had more than 30 fx's. Spine, sternum,ribs and digits among other minor fx's. In 1994, as part of an NIH study, I was started on Fosamax. I was on that drug, until I was diagnosed with Osteonecrosis of the Jaw. Nice! When I was diagnosed in 1989, the literature said that there were less than 100 case, since 1972, and most of those cases, were in Japan. I am a nice Irish girl. I even have to red hair to go with. Ursa1320, please remeber this as you progress in Med School. You just might be one of those female Docs to find that elusive Zebra. Good luck and Godspeed.

Can Lung Endometriosis affact babies from birth?