DI woman shares her struggle with endometriosis

Sarah Mathis was 11 the first time her period left her curled on the cold bathroom tile – nauseous, dizzy, and too weak to stand between waves of pain. 

For years, she was told it was normal. 

“I missed school, I quit sports, and I started to think maybe I just had a low pain tolerance,” the Daniel Island resident said. “It took almost a decade before anyone even said the word 'endometriosis' to me.” 

Mathis’ story is one countless women know all too well. 

Endometriosis, a chronic condition where tissue similar to the uterine lining grows outside the uterus, affects roughly one in 10 women worldwide. Symptoms range from severe menstrual pain and heavy bleeding to infertility, bloating, and even bowel or bladder issues.  

“It's estimated that endometriosis affects about 11% of the general population,” said Dr. Courtney Poston, a minimally invasive gynecologic surgeon at MUSC Women’s Health. “But to be honest with you, the incidence of endometriosis is probably higher than that due to under-reporting and misdiagnosis.” 

Despite how common it is, Poston said, “It can take an average of eight to 11 years to achieve a diagnosis of endometriosis in this country.” 

Part of the problem is how the disease presents. 

“Endometriosis is a multi-systems inflammatory condition, so it affects multiple different parts of the body, not just your gynecologic organs,” she said.  

Until now, diagnosis has relied on laparoscopic surgery, where physicians insert a camera into the abdomen and biopsy tissue. Imaging like ultrasound and MRI can sometimes detect disease but often miss earlier or less visible cases. 

But that standard may be starting to shift. 

Researchers at institutions, including Yale School of Medicine and the University of Cincinnati, are developing blood tests designed to detect endometriosis earlier and without surgery. Some analyze inflammatory markers like CA-125 and BDNF, while others use genetic and molecular signals in white blood cells. 

In one multi-center study of nearly 300 women, a blood test identified more than 60% of endometriosis cases missed by imaging. 

“It’s exciting,” Poston said. “These things would genuinely be game-changing for all of these patients.” 

For patients, that could mean faster diagnoses and less time suffering through ineffective treatments. 

Right now, many are placed on hormonal birth control first, sometimes for months or years before finding relief. Researchers are also studying whether blood-based biomarkers could predict which treatments will work, reducing that trial-and-error period. 

For patients like Mathis, earlier answers could have changed everything. 

“I started to feel crazy because no one could tell me what was wrong,” she said. “It seemed normal to throw up and pass out every month. If there had been a simple test back then, I could have gotten help so much sooner.” 

Still, experts caution the tests are not yet widely available and remain in clinical validation. 

“I’m hopeful that it will be more on the order of a year to years,” Poston said.  

When they arrive, surgery will likely remain part of treatment, but the path to it could become far shorter. 

“I think it could take out that middleman and get patients to the right specialist sooner,” Poston said. “This is a complex disorder, and this new treatment could change the trajectory of a (woman’s) life. No woman should have to be in pain for all of her reproductive years, and they deserve access to specialized care for this disease.”