Medical experts now believe that the primary method of treating endometriosis—cutting out damaged tissue—may actually be exacerbating the pain of the eleven percent of women who suffer from the condition.
According to The Guardian, there is a growing medical consensus supporting the idea that there are three different types of endometriosis, which up until recently had all been treated the same. Though all forms of endometriosis involve tissue similar to that found inside uterine walls growing in other parts of the body, this “errant tissue,” as doctors call it, is not always the primary cause of the pain they experience.
For those with the type of endometriosis that causes painful ovarian cysts, surgery is often the best option. However, new research has found that 80 percent of those who suffer from the disease actually have the superficial form—known as peritoneal endometriosis—and their pain is caused by the ways that nerve endings interact with the tissue, rather than the tissue itself.
Because surgery involves doctors slicing through nerve endings in order to cut out that tissue, it’s likely to cause patients more pain in the long run. Often, doctors attempt these surgeries multiple times.
Scientists have known about the different categories of endometriosis for a decade, but they have only received funding for further research in the past five years. And it is only recently that endometriosis has been taken more seriously: Historically, many doctors have not believed patients who report their pain, despite nearly 40 percent of people with endometriosis reporting pain so severe it has resulted in an emergency room visit, according to a 2020 U.K. study. Vice reports that it typically takes women 10 to 12 years to even get a diagnosis because they’re “more likely to have their pain reports discounted as ‘emotional’ or psychogenic’ and, therefore, ‘not real.’” And paradoxically, people of other genders often have their pain ignored precisely because they’re not women.
Now that the issue is finally gaining more attention, researchers are pushing for better diagnostic tools, which is the first step to making sure patients can be properly treated. Currently, the subtypes of endometriosis can only be discovered via laparoscopic surgery; but for the 80 percent of patients with superficial endometriosis, less invasive tools would help doctors begin exploring treatment plans that focus on managing their pain, and avoid exacerbating it.
However, those tools also require more research and more money for that research, according to Katy Vincent, a senior pain fellow and associate professor in Oxford University’s Nuffield Department of Women’s & Reproductive Health, resources that have been historically unavailable to those hoping to better understand the disease. “Endometriosis continues to be more hidden than other diseases, partly because it is a women’s condition, and the funding and the research just isn’t there yet,” she told The Guardian.
But it’s not just the lack of funding that serves as a barrier to a greater understanding of endometriosis when so many doctors are still unwilling to believe their patients are actually suffering. People fighting to have their pain taken seriously should at least be able to expect that when they finally do receive treatment it relieves some of their suffering, rather than contributes to it.