Casey Joe recounts nine-year journey toward her endometriosis diagnosis
In this episode of theGrio’s "Unheard," content creator Casey Joe chats with theGrio about her eventual endometriosis diagnosis and living with the disease.
Casey Joe was diagnosed with endometriosis in 2018. In this episode of “Unheard,” Joe is opening up about how the condition impacted her.
The content creator was 23 years old when she was diagnosed with endometriosis, but her symptoms began when she was 14.
Joe experienced severe cramping, 10-day-long menstrual cycles that happened every two weeks, and during her mid-20s, she developed ovarian cysts.
“Endometriosis is an inflammatory disorder,” explains Dr. Jessica Opoku-Anane, a gynecologic surgeon at Columbia University who specializes in minimally invasive techniques. “It is when the cells that line the inside of the uterus or your womb, what comes out when you have your menstrual cycle, if they go outside of the uterus into other parts of the pelvis, sometimes they go in the thorax, or other places in the body; we call that endometriosis.”
“When those cells go in the wrong place,” Opoku-Anane adds, “it causes a lot of inflammation that causes pain and sometimes can lead to infertility.”
Joe goes into detail about the moment she received a proper diagnosis — which took nine years.
“In January 2018, I first saw a doctor just to pretty much be put on birth control,” Joe reveals. “When he looked at me, he said, ‘Oh, it looks like you have a tumor in your stomach’ because my stomach was so large.”
Joe says they did testing and MRIs, and the doctor decided he wanted to do surgery to thin out her uterus.
“Three or four days before my scheduled surgery, I got the blood work,” she shared, “and a few hours later, he called me and told me, ‘Hey, I will not be able to perform the surgery on you because I believe you have cancer, and you have to go see an oncologist.’”
“I wish I can explain fully, like the medical ways, but I’m not a doctor,” Joe continued. “But it was just basically the numbers in my blood [were] a lot higher than it was supposed to. And a lot of times, that is in cancer patients. My aunt actually had cancer, and her number was lower than mine, and she passed away about three weeks later. So, I was pretty much thinking, ‘Yeah, OK, I have cancer, and it’s almost my time to go.'”
Joe’s mother refused to believe she had cancer, and they sought a second opinion from a doctor connected to a family member who worked in a hospital.
“We got an internal ultrasound, and the doctor pretty much told me, ‘I don’t think that’s cancer; it looks like endometriosis,’” says Joe.
”I’d never heard of it before,” she admits. “But I knew that sounded better than having cancer.”
Check out the full video above for more of Casey Joe’s journey.
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