It has been one week since I saw Dr Seckin in New York City and my belief that I have Endometriosis was more or less confirmed (technically speaking Endo can only be confirmed when the tissue removed during surgery is analyzed – but the symptoms make it very obvious).
During this past week I have felt several different things, in stages, such as experiencing grief.
I have been trying to understand where the me comes into this disease. How has this disease shaped me in the course of 15 years (or perhaps my entire lifetime)?
Endo is a mysterious disease that hasn’t really been figured out yet. Where does it come from? Who knows. Is there a cure? Not yet. Is is common? YES. 176 million women worldwide and 1 in 10 in the United States have it.
There is this idea that if I am “cleaned out” I will be better. I will be rid of the disease. I would have to have deep excision surgery for this to be so, but it is expensive (out-of-pocket $25,000!!!) and no Endo surgery guarantees that the pain will go away or that the disease won’t come back.
How do I manage and live with it is what I keep coming back to. Even if I have surgery, will I still technically have the disease in my body for the rest of my life? How does that define me?