Over the past year, I’ve spoken to too many women who, despite years of medical treatment, are only now having their endometriosis addressed in a meaningful way. They’ve been in the trenches of infertility. They’ve done IVF. They’ve lost pregnancies. They’ve lost organs. They’ve lost hope. They’ve tried everything and more. They’ve done their absolute best, given their circumstances. They’ve fought and fought and fought. Some of them are still fighting. Some of them have children. Some of them don’t.
You are not alone. Your pain is real. Your story is important. Your health is important. I see you. I hear you.
Chances are, you’ve not been diagnosed properly.
Chances are, you’ve got more symptoms of the disease than you realize.
Chances are, you were demeaned and marginalized when you tried to speak up and find help from a doctor.
Chances are, your doctor is not treating your disease properly.
Chances are, you live with pain every day.
Chances are, nobody knows this.
Chances are, your endometriosis was not/is not considered in the treatment of your infertility.
Chances are, your endometriosis is worse after medical treatments for infertility.
Chances are, you are struggling more now than ever before, even if you successfully conceived and delivered a child.
Chances are, you feel alone and scared.
Chances are, you feel helpless.
Chances are, you’re familiar with depression.
Chances are, you can’t find the tools and support you need to get the help you deserve.
Chances are, you can’t afford the surgery that you desperately need because most surgeons don’t take insurance.
I am done with any discussion that assumes that women with endometriosis have been diagnosed with their disease. I am done with discussions that assume that women have access to proper care and treatment for their disease. I am done with discussions based on old, ignorant medicine that hurts women. I am done with discussions that don’t include patient voices.
We cannot talk about endometriosis without talking about misdiagnosis, mistreatment, and misogyny. We cannot talk about endometriosis without understanding how privilege and finances play a role in the treatment of endometriosis. We cannot talk about endometriosis without demanding that everyone - EVERYONE - do better.
Anything less than the latest research, the top experts, centers for excellence, and a stance that empowers women to understand their disease and demand better care, is not enough. Anything short of justice is not enough.
And, I won’t accept it anymore.