One in 10 Who Menstruate Suffer from Endometriosis. Why Do We Know So Little about It?
Compared to other diseases that have similar economic burdens research on endometriosis has been severely underfunded. This is due in large part to the fact that we don’t talk much about periods.
“Like little elves in my belly, just punching, kicking, beating up my organs.” This is how Shea O’Donnell, a psychology graduate student at San Diego State University, used to describe pain from a disease called endometriosis to their mom when they were 12 years old. They still have digestive problems, back pain, abdominal and vaginal cramping years later.
It’s estimated that about one in 10 people who menstruate suffer from endometriosis, which occurs when tissue that grows in the uterus migrates to other parts of the body, becomes inflamed in response to cyclical hormonal changes and forms painful lesions.
People with it experience constant and irregular flare-ups, which can make their symptoms unbearable. Patients who suffer from it typically see four to five doctors over a period seven years before they receive an accurate diagnosis. This is possible only through invasive surgery.
One recent study put the cost per patient in the year following diagnosis at more than $15,000, and that doesn’t even account for school missed and work opportunities delayed. There is no cure.
In spite of how common and debilitating it is, research on endometriosis is severely underfunded–in large part because of stigma around menstrual problems and the normalization of female pain, experts say.
NoemieElhadad, an associate professor from Columbia University, recalls feeling embarrassed about her condition because it was so closely tied to her period. “I would concoct crazy stories in order to explain why my fainting in the subway in front o my friends, when the obvious answer was I faint from pain sometimes’,” she said.
Elhadad received years of treatment from doctors who said that her shoulder pain was unrelated to her endometriosis. In fact, it was the primary cause. Although most lesions are found in the abdomen, some can also be found in the brain, diaphragm, and lungs.
“People have believed that multiple problems were going on too often in the past,” Hugh Taylor, a Yale School of Medicine professor of obstetrics and gynecology, says. “They have one problem. Let’s fix it .”
When Elhadad’s endometriosis began presenting at age 13, it would make her sick one week out of her menstrual cycle. By her late 30s, she would have just one good week. “I was struggling with this, but I was also becoming increasingly frustrated because it felt like there was no way out. She says that she can’t continue like this literally.
In 2016 she and her Ph.D. students at Columbia launched a research project called Citizen Endo and an app called Phendo designed to phenotype, or characterize, endometriosis. Currently, more than 15,000 users in several dozen countries use the app to track their symptoms and pain management techniques. Elhadad also collaborated with Clue, a period tracking app that allows you to compare your endometrium with a healthy cycle.
Elhadad was struck by how endometriosis can inflame the whole body and the time it takes to manage pain.
Laurie Beth Koller, an endometriosis patient in New York City, suffered with the disease for 10 years before she was diagnosed. She has had two surgeries and tried many birth control and medications. Now she works with a pain specialist for chronic nerve pain. She views the disease as a special state of being alone. Koller states, “I think women don’t talk about our bodies going through.” “And I believe that endometriosis, which is a prime example, is an .”
Elhadad hopes that Phendo will help improve the clinical understanding of endometriosis and also help patients better manage their condition and communicate their symptoms to their doctors.
Other researchers are making strides as well: the first noninvasive test for endometriosis is on the horizon.
” “It kinda reinforces the idea that if you understand better menstrual cycles, we might actually be able to help people in their well being,” Elhadad states.
The author of 5 books, 3 of which are New York Times bestsellers. I’ve been published in more than 100 newspapers and magazines and am a frequent commentator on NPR.