There is something growing inside of my body that’s not supposed to be there, and I can’t do anything about it. It hurts me physically as well as my relationships with those around me. Too little is known about this disease that was discovered over 300 years ago. Doctors still can’t even agree on safe treatment options, instead they proscribe harmful treatments that give little to no return on the investment of risks taken.

When I told my mom that my doctor thought I might have endometriosis she responded with, “It could be worse. At least you don’t have cancer.” I don’t think she knows how much those two sentences have hurt me; in fact I know she doesn’t.

Do you have endometriosis?  Do you know someone who has?

I created this postcard in 2007 to express my feelings. I intended to share it anonymously at PostSecret.com, but I was inspired to share it publicly after a post in the Endometriosis Research Center’s Yahoo group struck close to home.



The question was “What should people know, what do people (wrongly) think?” One of the responses was made by a mother about her daughter. Someone had said to her daughter, “Well I know people with cancer that make it to school everyday!” which was crushing.

As if dealing with a disease that has no cure and whose treatment options are dangerous and damaging wasn’t enough, the lack of understanding is that much worse. I consider myself to be blessed that so many try to understand, but I see them struggle with it everyday like I’m supposed to magically get better. I watch as they can’t help but become frustrated with me when I say that I am not okay, but appear fine.

My dad has been fighting cancer for about five years now. When I tell anyone about my dad the response is always something to the effect of, “Oh I’m so sorry, I’ll pray for him!” or something of similar ilk. While they may not understand fully what it means to have cancer or watch someone you love deal with it, it is common knowledge that it is a horrible thing to have to go through and scary to boot.

Endometriosis is scary, too.

5) I cry every time the pain is so bad that it keeps me from being a productive member of society. It is the pain that makes it hard for me to visit with friends and family or work, not because I don’t want to.

4)  Endometriosis is a disease; it’s not just bad cramps. Many other medical conditions also come as a “gift” when you have endometriosis. No, there is no known cure. Having a baby will not solve my problems and you’re an ass for saying so. Lupron is not a miracle shot, it is a temporary solution with very serious long-term side effects. Do NOT perform a laparoscopic surgery just to get it under your belt and stick it on your resume, if you can’t help, help me find someone who can.

3)  My emotions are out of control, and it’s not just from the Lurpon. I am uncomfortable in my own skin and ashamed of what this disease has done to my body. That too makes me cry every day, because I don’t know how to deal with this and neither does anyone else.

2)  Don’t tell me you know how I feel, that you’ve had something similar. You don’t, and you didn’t. Endometriosis has a very distinct feeling and if you do not have it, you cannot imagine what it is like to feel so clearly know where and when the disease is spreading inside of you while you and the doctors both are helpless to stop it.

1)  Learn about endometriosis with me, help me not be scared. This is the most important thing you can do for me.

For more information about endometriosis go to http://www.endocenter.org/supportgroups.htm