After years of criticism from the medical community, the authors of a scientific study that aimed to measure the “attractiveness” of women with endometriosis have requested that the study’s findings be retracted from the medical journal that first published them in 2013.
Endometriosis is a condition in which the layer of cell tissue that usually grows on the inside of the uterus grows outside of it. It’s a painful disease that affects roughly 11 percent of women in the U.S. and can lead to uterine scarring and infertility. As Sylvia Freedman, co-founder of the patient-advocacy group EndoActive told the Guardian this week, research into the disease is also “grossly underfunded globally compared with what it costs the economy.”
The study, whose lead researcher, Dr. Paolo Vercellini, is an obstetrician and gynecologist at Università degli Studi di Milano and the former president of the World Endometriosis Society, aimed to “evaluate physical attractiveness in women with and without endometriosis.” It concluded that women with rectovaginal endometriosis, a severe form of the disease, were “more attractive than those in the two control groups,” and that they had “a leaner silhouette, larger breasts” and had their first sexual-intercourse experience earlier in life than those in the other groups.
The women who took part in the study did not know or consent to having their appearance rated by the scientists when they signed up. In their medical consultations, the study’s authors measured each woman’s body mass index, as well as their waist-to-hip ratio and breast-to-underbreast ratio, and asked the subjects about their sexual histories. Researchers also selected only white women for participation in the study.
“A total of 31 of 100 women in the rectovaginal endometriosis group (cases) were judged as attractive or very attractive, compared with 8 of 100 in the peritoneal and ovarian endometriosis group, and 9 of 100 in the group of subjects without endometriosis,” the authors wrote.
The research was publicly funded by the University of Milan school of medicine and published in the medical journal Fertility and Sterility in 2013. Its findings were worthwhile, the authors claimed, because knowing whether people with certain physical characteristics were more prone to severe endometriosis would be useful.
“When I first read the study and saw it was by Vercellini, I thought I must be reading it wrong, since he is such a powerful and respected endometriosis specialist,” Freedman said. “But it would appear that time, money and energy has been put into a study trying to draw a connection between rectovaginal endometriosis and the way a woman looks, from the perspective of others.”
She added, “It’s disgusting, it makes me sick,” explaining that she and other endometriosis patient advocates and researchers are “begging for research funds.”
The study was widely criticized after its publication, and while Fertility and Sterility did not remove the paper from its site or issue an apology for sharing it, it did recently post an article-withdrawal request from the authors at the top of the page.
While the authors argued that they had conducted the research “in good faith and according to correct methodology,” critics remained unimpressed, saying that this was yet another example of a scientific study about women, but not for women.
As Dr. Rebecca Szabo, an Australian OB/GYN and academic at the University of Melbourne who has been campaigning for seven years to have the journal apologize for the publication of this study, told the Guardian: “The question is: How is it possible that [this study was] conceived? It was 2012, not 1912.”