After my doctor said I needed surgery for the cyst he thought was an endometrioma, I was talking to (ok, crying to) a good friend on the phone: “He thinks the inside of my uterus has gone rogue,” I sobbed, “The inside is growing on the outside of my organs, and it made this bloody cyst, and he’s going to have to laser it, and…” My friend cut me off. “Ok, take a breath. That’s not a real thing. What did he actually tell you?” But it is a real thing, and that is what the doctor actually told me…not in those words, of course, my uterus “going rogue” was my own interpretation, but even then, as I spiraled out of control, sure I was going to die from the anesthesia, I got my first taste of the truth: Most people have no idea what endometriosis is, despite the fact that an estimated 10% of women have it.
Endometriosis, often called endo, is a chronic disease in which tissue from the inside of the uterus grows outside of the uterus. It can grow on the outside of the uterus itself, on and in the ovaries, the fallopian tubes, and on the bladder, intestines, bowel, diaphragm, lungs, and other organs, even the brain (but that one is super rare). This tissue, whose normal function is to live inside the uterus and shed for monthly periods, still bleeds each month, which leads to inflammation and scar tissue on your organs. It can even cause them to become stuck together. And all of this can cause pain and bloating, ranging from mild to extreme.
There are four stages, and while it is uncontrolled cell growth, it is not cancerous. The cause of endo hasn’t been determined, though there are many theories, and there is no cure. There are, however, lots of ideas about how to treat it, from hormone shots to birth control to exercise and diet change.
Want to know more? Here’s a link to the trusty Wikipedia page: https://en.wikipedia.org/wiki/Endometriosis