When I saw a first person assignment about endometriosis, I hesitated to claim it because of its personal nature, but I decided my experience might help someone else. I lived with the problem for many years until a surgeon detected it while removing my ovaries when I was over 60.
I never thought I had more monthly pain than most other women, but there is no way to compare one person’s pain with that of another. It seemed to me that most of my trouble started with a tubal ligation when I was about 39. I had taken birth control pills for many years, and they actually made me feel great. But I was concerned about taking them indefinitely, so chose to have tubal ligation. At that point, the doctor took me off the pills, but I never felt good after that. So I asked to have them back. At that time, there was little mention of any harm they might do. So I went back on them and felt better.
Within a couple of years, I started to feel like I was carrying a huge rock around inside me and I was bleeding about 3 weeks out of each month.. My doctor did a hysterectomy, but left the ovaries. I still had a lot of cramp-like pain, but just lived with it. He put me on hormones, and they made me feel better, although some of the pain continued.
About 20 years after my hysterectomy, my lower back pain became so severe that I went to the doctor. He sent me to my GYN to have an ultrasound on my ovaries. It showed three large cysts with solid matter in one, which my doctor said could easily be cancer. Surgery to remove my ovaries revealed no cancer, but the surgeon was surprised to find endometriosis, which he said feeds on hormones. So he took me off the hormones.
After that I saw little change in the amount of pain in my back and otherwise, and I really missed the hormones. I can’t tell that anything done for me helped the pain much, which may or may not have anything to do with the endometriosis. I find it hard to believe that hormones feed endometriosis, because I felt so much better while I was taking them.
As it is with me in most cases, my experience with endometriosis is probably different from that of others. I only know I feel sorry for those who knew what was wrong when they were young but didn’t know what to do about it. Hopefully surgery and technology have improved enough in the last 10 years that the medical people now know how to treat endometriosis more effectively. Anyone suffering that kind of severe pain should find a good doctor and get it thoroughly checked out, because endometrial pain can mimic other kinds that might be more serious or even deadly.