Why I Wish I Had Talked About My Endometriosis
When the irregular bleeding first started, I told no one. I was terrified of what might be happening to my body. I feared it was some sort of uterine cancer or worse. Bigger than the fear of what was happening to me physically was the fear of what others might say.
Would they have no idea what was happening to me either and just look at me with helpless pity if I told them? Would they blame me and assume I had done something to cause whatever this was? The biggest fear in sharing something so vulnerable is that we might expose ourselves for nothing. To not receive the big payoff of comfort afterward. That we might spill our guts, and not find connection—but instead, alienation.
So, for about six months, as I trudged to doctor after doctor who performed test after test with no results or named diagnosis, I held in my secret. I think, looking back, that I believed that telling people would also make this more real, and it was a problem that I was desperately hoping would go away. I wanted the massive bleeding to be temporary and to disappear on its own. It will come as no surprise to anyone reading this: My endometriosis did not go away on its own.
The cure came for me nine months after the unstoppable bleeding had begun. When the problem first started, I lived in New York City. I saw at least six doctors, and had given up on finding out what this was.
Then, I accepted a new job in Florida, and with my job came new insurance and a new gynecologist. She instantly diagnosed me, and a week later, we scheduled the surgery that made the bleeding go away. Nothing short of a miracle.
But, the surgery became just one more reason to never tell anyone what had happened. It happened in 2006, when I was in my mid 20s. None of my girlfriends were sharing similar stories of irregular menstrual cycles, and I didn’t want to be the odd woman out.
Fast forward 15 years
The door slowly opened to conversations about endo only when, one by one, my married friends started confiding in me that they were having trouble conceiving a child. I had five close friends all struggle to get pregnant, and they all were not talking about their problem either. It was as if we were all cloaked in this massive shame.
Culturally, a woman’s worth so often hinges on her ability to bear children—even if she has no desire to have them. I personally have always been about 50/50 on the idea of having children, but I have also nevertheless always been keenly aware that if I could not give a man a child, that I am somehow a woman with a deficit. Not good enough.
Of course, that’s hogwash, but it is still hard to believe that I am worthy and deserving while carrying this problem. That it somehow makes me less of a woman.
But, as I comforted my friends who struggled with fertility, I could see so clearly that they were not less than just because their uteruses were not cooperating. My friends are all beautiful, kind, intelligent women who I admire fiercely. I would never see them as less than for their fertility issues. And, yet, turning that same lens of compassion toward myself has been harder.
The endo connection
I have to admit that it was this site that changed things for me. One of my closest friends, a woman I have known since college, writes for this site. When she told me, I was shocked. “Wait, do you have endo?” She told me she did, and that she had just—JUST—had the surgery. Here was someone who had been in my life for 19 years, and only six months ago did we realize we had this in common.
Why is it that the second that we know someone else who has the same problem are we able to accept it in ourselves?Soon, I started talking about it, and found out two more of my friends also had endo AND had also had the surgeries. They said it just never occurred to them to tell me about the surgeries.
Wow. How many of us are keeping ourselves in the dark, denying ourselves the compassion of connection, because we are too scared to admit a truth? A truth that is not shameful. But only when we bring it to light do we see that there is no shame.
Everyone I have ever met suffers from something. A physical or mental health condition. Nobody makes it to adulthood without something on the ol’ medical chart. The more I walk this planet, the more I see that we are all connected in the struggle.
With every woman I talk to about my endo, it gets a little easier. A little more normalized. Each conversation frees me a bit more from the belief that I am less than. Instead, I am more clearly able to see that endo is a part of my story, but not at all the thing that defines me in any way. I am free to define who I am and write my own story today.
Do you know what your endometriosis phenotype is?