Endometriosis is a systemic inflammatory disease that is characterized by the presence of endometrial-like lesions that are found outside of the uterus.
“That may be reproductive organs, that may be your bladder, that may be your lungs,” said Heather Guidone, Program Director for the Center for Endometriosis Care in Atlanta, Georgia. “It can and has been found anywhere in the body.”
Endometriosis symptoms include body-wide pain in various and diverse ways, fibrosis, adhesions, infertility, painful ovarian cysts, painful periods, painful bowel movements and organ dysfunction.
Guidone said it effects 190 million people worldwide, but is under diagnosed. The disease can years to diagnose, which can only be done surgically.
“Unfortunately, there’s a lot of normalizing, a lot of ignoring the patients symptoms, a lot of refusal to provide or refer to someone who can perform surgery, that is all contributing to a significant, ongoing sustained delay in diagnoses,” she added. “People can see as many as 5-10 physicians before someone takes them seriously.”
Normalizing and ignoring patients symptoms, is where things get frustrating for Guidone. That’s why she’s not keeping quiet about the disease. She’s featured in a new film called, “Below the Belt,” which documents the politics, institutional failures, and lack of patient support for the disease, according to Guidone.
“I’ve been involved with Shannon Cohn, who is the executive producer, along with Hillary Rodham Clinton and several other notable characters who have been involved in this second film,” she said. “There was a first one called, ‘EndoWhat.’ ‘EndoWhat’ has evolved from their first film, now to this school nurse endeavor, various awareness and education endeavors. Importantly, they were the first organization to secure, Shannon Cohn personally, Department of Defense research funding which is so desperately needed for Endometriosis. And now, we have the release of Below the Belt. So it’s been evolving over the last decade or so.”
The film will air on PBS on March 29.
Rebecca is a veteran multimedia journalist serving as one of our core reporters in the Finger Lakes region. She is responsible for telling stories that matter to every day Upstate New Yorkers. Have a question or lead? Send it to [email protected].