Hi everyone, I'm Stephanie, founder of ENDEndoCLE and a fellow Endo Warrior.
ENDEndoCLE began in 2019 as the founding organization behind an event called Putting an END to Endometriosis, which we had hoped would be the first ever Cleveland-based fundraiser specifically to benefit endometriosis and women's pelvic health issues. Unfortunately the March 2020 event had to be canceled as the growing health crisis surrounding COVID-19 began its stronghold on our globe. But we know that the fight against endometriosis continues regardless, and we definitely aren't giving up our goal of bringing women together to share our stories, raise funds and bring awareness to the suffering that so many are unfortunately experiencing.
I was officially diagnosed with Stage IV Endo in 2016, after several years of unexplained symptoms and fruitless visits to doctors. My first surgery was a laparoscopy in which my doctor proclaimed me to have the worst case of endo she's seen in 20 years of practicing medicine, and prompted her to proclaim to my family that "no wonder she kept coming in telling me she was in pain." Sadly, I know that I'm not alone in hearing similar proclamations from doctors following the same diagnosis. I lost my appendix in that surgery, along with one Fallopean tube.
Two years later I was back in the operating room again, this time after finally finding a wonderful specialist who truly listened to my symptoms and needs. Ultimately, after a suspicion of adenomyosis was added to my list of issues, I decided on a total hysterectomy, leaving one ovary. I know that adding my uterus, remaining tube and one ovary did not rid me of endometriosis, although my specialist did perform excision as part of that surgery as well.
At the moment I am thrilled to be able to say that I am painfree as a result of that surgery. However, I remind myself daily of the strength that was needed to just function normally during the hardest flare days. No woman should have to suffer in this way. There is not nearly enough light shed on this awful disease. And working together with an amazing team behind me, I hope to be part of the change.