I was diagnosed with endometriosis in 1991. I had suffered many years before I had my surgury. I then had three children immediately after the laparoscopy. Since then, I have had pain only the first two days of my menses. A heating pad and Advil would help get me through.
Around 5 months ago, I started to cough up blood. I was really scared. I smoke and assumed that something was terribly wrong with me. I went to see my MD and he told me to see a pulmonologist. (please don’t mind the spelling). I started to notice that I would only cough up the blood during the menses. I mentioned it to the doctor and he said that it is rare and he felt it must be something else. After a CT and two broncscopy’s, he has determined that I have Catamenia Hemoptysis (which means….endometriosis bleeding in the pulmonary area). He was unable to find anything wrong with my lungs.
Over the next month, I am going to have another CT (with contrast) and he wants me to get samples of my blood that is coming from the lungs. He will have these tested for endometriosis tissue.
He also would like me to go to a hospital in PA. University of PA Hospital. I have spoken with two other GYN’s and the all say the same thing. I must go to a learning Hospital. They would be able to help complete the diagnosis and find a solution.
Based on what I have been able to find; meds or a hysterectomy are the only choices.
If anyone out there is going through this or knows anyone else who is, please email me DNegri@aol.com or leave me a messege on this site. Thank you.