I Have Endo and I Have Questions

I often think about how many times a woman that looks like me has spent the majority of her years in inexplicable pain. How many times did she beg to stay home from school as a child during the first few days of her period? How often has she had to use her sick time to call out of work as the pain becomes increasingly unbearable with the start of each menstrual cycle? I sometimes imagine how hard it may have been for her to explain to her parents, or friends, or partner, that this is NOT something that a few Midol and a heating pad can remedy. I often think about how many women that look like me, went back and forth to the doctor for YEARS searching for answers and solutions, only to be disappointed and dismissed time and time again.

"Painful periods are quite normal for some." "Try to exercise through it." "Take birth control, that should help." "Your blood work is normal and your vitals are fine. Stop worrying, you're healthy!"

Have these exact lines been spoon fed by Primary Care Physicians and OBGYN's to anyone besides me? How many women suffered failed relationships because they couldn't control their mood swings? Or suffered miscarriages and couldn't figure out why? How many women built up a healthy dosage of sexual insecurity afraid that each act of intimacy would result in severe pain and discomfort-or worse, subpar performance?

How many women suffered in isolation with depression and anxiety because they didn't know anyone else in the world that could relate or understand? Or because they were starting to feel like it was all just made up in their heads? How many women carried the weight of these burdens for what felt like a lifetime, before finally being diagnosed with this disease, described as more inconvenient than harmful, called Endometriosis? Common, yet uncomfortable, and let's not forget "incurable."

And I often wonder, how many women who look like me took this diagnosis home with them? Sat with it, tried to comprehend it and wrap their minds around it, and then took it to the internet with the hope of finding some answers, or at the very least, some validation, only to find the faces, experiences, stories, and studies...of white women.

1 in 10 people with female reproductive organs are diagnosed with Endometriosis during their reproductive years. That’s approximately 176 million people worldwide. Are none of those people Asian? Indigenous? Hispanic? Black??? According to Google, the online support groups, the IG pages, and the Endo Warrior hash tags, there are very few women of color who have a voice in this fight. It is said that black women are less likely to be diagnosed with Endo than white women. But I wonder, is that because genetically, we are less likely to develop this disease? Or, is it because we are less likely to be heard and cared for by medical institutions if we do? Is it because studies show that doctors are less likely to believe the pain and suffering of black women than they do white women? Or maybe because a black woman is less likely to have access to quality healthcare that will give her a chance to diagnose, understand, and effectively heal her body?

It's clear that I have many questions. Far more now than I did prior to my own diagnosis. But I guess my main concern is this: Is there anybody that looks like me, who has a reproductive system that needs love? Support? Advice and healing? Is there anybody who looks like me that needs resources, community, and maybe just a tad bit of relatability and understanding? Is there anybody else, that looks like me, that has suffered in any of the ways that I’ve described, alone and afraid, because there was nowhere that you could turn that accurately and vividly depicted your black experience and validated your black feelings? If the answer is yes, I hope you find comfort in knowing that you are absolutely not alone.