Catherine Gray's struggle with endometriosis began at age 13, marked by daily pain that affected her school and work life. Her condition worsened over the years, eventually involving her bladder, intestines, and bowel. It wasn't until she saw a fertility specialist in 2020 that she received an endometriosis diagnosis.
"Endometriosis is a terrible disease. It’s not cancer — it’s considered benign — but it can behave like cancer sometimes," said Mateo G. Leon, MD, assistant professor at McGovern Medical School at UTHealth Houston and a minimally invasive gynecologic surgeon at UT Physicians Advanced Minimally Invasive Gynecology (AMIG) – Greater Heights.
Initially dismissed by her doctor who suggested pregnancy as a cure, Catherine took charge of her health by researching best practices for endometriosis care. She discovered the importance of excision surgery over ablation and found Dr. Leon to perform the procedure.
"She woke up from those surgeries with exactly the same symptoms, so at best it provides some temporary relief," Leon said about ablation treatments. "Removing the lesions allows us to have a pathologic confirmation of endometriosis."
At her first appointment with Dr. Leon, Catherine was diagnosed with stage 4 endometriosis due to bowel and bladder involvement. They discussed surgery as the best available treatment.
"I’m a huge advocate for shared decision-making with patients," Leon said. "She was very interested in surgery to remove the endometriosis."
Dr. Marianne Cusick, associate professor at McGovern Medical School and colorectal surgeon at UT Physicians Colon & Rectal Clinic – Texas Medical Center, collaborated on Catherine's case due to her expertise in intestinal involvement of endometriosis.
"The goal for endometriosis surgery is to remove all the endometriosis and associated fibrosis while minimizing intestinal resection," Cusick explained.
In January 2024, Catherine underwent a six-hour robotic-assisted excision surgery. Post-surgery, she reported no pain and significant improvement in her quality of life.
"It’s still surreal to me that I don’t have to take ibuprofen on a daily basis for pain," Catherine said.
Dr. Leon emphasized the importance of multidisciplinary care for treating endometriosis, often involving physical therapists, gastroenterologists, pelvic floor specialists, and behavioral health therapists.
"There are suggestions that endometriosis takes eight to nine years to get diagnoses," Leon noted. "That takes a toll on the mental health of the patients."
Catherine hopes sharing her story will help others seek appropriate treatment sooner.
"If I had been listened to and diagnosed as a teenager...it would have made a huge change in the course of my life," she reflected.
Leon credited Catherine's proactive approach for her successful treatment outcome: "We developed a plan together...It’s individualized care."
Catherine continues advocating for proper endometriosis treatment and urges others to research national standards of care and consult specialists trained in excision surgery.
