Sharing a long endometriosis journey to help others

From the day her period started at age 13, Catherine Gray experienced daily (often excruciating) pain that interfered with school, work, and her life as a young adult. She later had issues with her bladder, intestines, and bowel. What she didn’t realize was that she had endometriosis, and it was spreading to other organs. There were many days she couldn’t get out of bed.

“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 with McGovern Medical School at UTHealth Houston and a minimally invasive gynecologic surgeon at UT Physicians Advanced Minimally Invasive Gynecology (AMIG) – Greater Heights. “It can invade your bladder, bowel, appendix, and even other organs if left untreated.”

Catherine slipped through the cracks for years. Doctors mentioned an endometriosis diagnosis when she saw a fertility specialist in 2020 at around age 34.

“The diagnosis was a surprise to me, because I was literally diagnosed and then dismissed in the same sentence,” Catherine said. “He told me I didn’t need treatment and my endometriosis would be cured or greatly suppressed with pregnancy. It actually became worse.”

As a nurse who works in health care quality, Catherine took charge of her endometriosis diagnosis researching and reading peer-reviewed databases regarding best practices of care. She discovered physicians who specialize in the best practice of endometriosis excision, which is how she found her specialist, Leon.

Excision is superior to ablation for two reasons, Leon said. First, ablation may only be burning the tip of the iceberg. This can potentially leave behind a lot of active disease. Catherine had two ablations of endometriosis from another physician, yet still had persistent pain.

“She woke up from those surgeries with exactly the same symptoms, so at best it provides some temporary relief,” Leon said. “Removing the lesions allows us to have a pathologic confirmation of endometriosis. No specimens are removed during ablation.”

At her first appointment, Leon diagnosed Catherine with stage 4 endometriosis, since she also had bowel and bladder involvement.

“I’m a huge advocate for shared decision-making with patients, and we talked about the possibilities,” Leon said. “She was very interested in surgery to remove the endometriosis, which is the best available treatment we have for it.”

They also discussed a hysterectomy at the time of her excision surgery, based on her MRI imaging. It revealed extensive adenomyosis, which is a condition of the uterus that can cause abnormal bleeding and pain. Catherine had both of these symptoms.

During the pelvic exam, Leon felt nodules in between her cervix and her colon. He decided to partner with another surgical colleague and treat Catherine with a team approach. Marianne Cusick, MD, an associate professor at McGovern Medical School and a colorectal surgeon at UT Physicians Colon & Rectal Clinic – Texas Medical Center, works with him on endometriosis cases, he said, because she has the knowledge and the clinical interest in that area.

Endometriosis and how it affects the intestines is quite variable, according to Cusick. There is not a single best test to confirm if it’s present or to what extent. Currently, the best ways to detect intestinal involvement of endometriosis is through patient history, high-resolution MRI, colonoscopy, and at the time of surgery. The most commonly involved areas are the appendix and the rectosigmoid.

“The goal for endometriosis surgery is to remove all the endometriosis and associated fibrosis while minimizing intestinal resection,” Cusick said. “We use specialized techniques to preserve and restore as much of the normal anatomy as possible.”

In January 2024, Catherine’s surgical team performed a six-hour, robotic-assisted excision of severe endometriosis. Although Leon described it as a challenging surgery, he said it went well because they were prepared. The team relies on preoperative imaging and surgical mapping to know exactly where the endometriosis is to pull together the appropriate team. The worst-case scenario, Leon described, is needing another specialist in the operating room and not being prepared for it.

Endometriosis is a complex condition. Because of this, Leon said specialists should treat and manage the condition. This often involves a multidisciplinary approach that may include several surgical specialists, such as gynecologists, colorectal surgeons, urologists, cardiothoracic surgeons, and more.

“Most importantly, this team needs to be interested and specialized in endometriosis care,” Leon said.

Following surgery, Catherine has no pain. She said it’s absolutely amazing, and her quality of life has significantly improved.

“It’s still surreal to me that I don’t have to take ibuprofen on a daily basis for pain,” she said. “Before, I had guilt that I wasn’t able to be fully present for my family. I have more energy for my kids now.”

Leon believes most patients with endometriosis benefit from multidisciplinary care in their medical treatment, as well. He often works with physical therapists, gastroenterologists, pelvic floor specialists, and behavioral health therapists. Unfortunately, women with endometriosis often bounce from doctor to doctor through the years to find the appropriate treatment.

“There are suggestions that endometriosis takes eight to nine years to get diagnoses, so by that time, chronic pain has been fully established and is difficult to treat,” Leon said. “That takes a toll on the mental health of the patients. Psychology and psychiatric help are an important part of treatment, too.”

While Catherine said it’s unfortunate to wait years for a diagnosis, she said it’s not uncommon for endometriosis patients – even though she had symptoms present for 20 years.

“One of the issues that women face is we get dismissed a little bit, and we’re kind of ashamed,” Catherine said. “And we also end up with an abnormal view of what pain is, because we’re used to this pain.”

Catherine appreciated Leon and his approach to care. She found it refreshing.

“Dr. Leon never pushed any sort of treatment on me. He was never dismissive,” she said. “With Dr. Leon and his staff, I felt like an individual rather than just a disease process that gets cookie-cutter treatment.”

She also loved his passion for educating the medical field and patients on endometriosis and the best standards and outcomes for patients, long term.

Leon thinks the success of Catherine’s story and her treatment is 100% her. He credits this to her proactive efforts: looking for specialty care, joining advocacy groups to discover reliable information, checking sources, and showing up to drive care.

“We developed a plan together,” Leon said. “I think that’s the most important thing and key to success. It’s individualized care.”

Catherine is a strong advocate for endometriosis and wants to spread the word about appropriate endometriosis treatment. Most importantly, rely on a gynecologic specialist trained in excision. She urges others to do their own research, look for the national standards of care, and become educated to make an informed decision.

“If I had been listened to and diagnosed as a teenager, or even in my 20s, and treated appropriately, I don’t think my endometriosis would have been nearly as extensive,” Catherine said. “And I might have been able to have a normal pregnancy. It would have made a huge change in the course of my life.”

Why does Catherine share her story? She said if she can help one person not have to go through what she went through, she would be happy.