Endometriosis diagnosis can take years, patients and specialist say

SPRINGFIELD, MA (WGGB/WSHM) -- For Amanda Berg, symptoms of endometriosis began when she was 13. It took nearly two decades before she received a diagnosis. Berg, a competitive figure skater from Western Massachusetts, said she would vomit multiple times during her menstrual cycle. When she raised those symptoms with doctors, she said they dismissed her concerns. 'I would throw up multiple times during my cycle, which again, shouldn't be normal and when I would bring it up to the doctors, they would sort of just brush it off,' Berg explained. Berg continued skating while trying to convince doctors that her pain was real. She described it as feeling like someone was scooping out the inside of a jack-o'-lantern with a knife. In 2017, nearly two decades after her symptoms began, Berg received an endometriosis diagnosis. She said years of being dismissed affected her. 'I felt like I was crazy. Like I felt like, okay, maybe there isn't anything wrong with me,' Berg added. 'To have your symptoms dismissed is, um, it hurts. It hurts to your core.' The World Health Organization says it can take between four and 12 years to receive an endometriosis diagnosis. Many patients see five or more doctors before getting an answer. Dr. Malcolm Mackenzie, an OB-GYN and endometriosis specialist, said the disease also faced a historical barrier because it affects women and menstruation, subjects that were often not discussed for generations. He described that as a long-standing 'menstrual taboo.' Mackenzie added endometriosis can produce a range of symptoms, including bowel and joint problems, rashes, mood changes, brain fog, and nausea. He said that range can make the disease difficult to identify. Mackenzie said one of the most important diagnostic tools may be listening to the patient. 'Tell me, did you miss any school? Did you, do you find that during your period, you also have other symptoms like bowel symptoms or brain fog or, or nausea or vomiting or whatever? And the answer is yes,' Mackenzie explained. He said missing school or activities can be an important warning sign. A period that keeps a girl from class or the ice is not something to simply accept. According to the National Institutes of Health, more than 70 percent of women diagnosed with endometriosis still live with pain that disrupts daily life. Berg, who now advocates for endometriosis patients, has undergone two surgeries. She said the disease still determines what her body can handle each day. 'There are days that I physically cannot move,' Berg said. Mackenzie said endometriosis can also be missed during surgery. For years, one appearance associated with the disease was so-called 'black powder burn' lesions. He said endometriosis can appear in many forms, meaning a provider looking only for that appearance may not recognize it. 'Now, we have a diagnostic criteria of being able to see it in laparoscopy and yet we've got well-intentioned providers who will look in there and say, no, you don't have it,' Mackenzie noted. Mackenzie said addressing the problem also means questioning some of what medicine has long taught about the disease. For Berg, that starts with being heard. 'Keep fighting. Um, keep saying something's wrong, even if it's hard,' Berg said.