By Grace Wickerson
Roughly 6.5 million people in the United States live with endometriosis, a chronic inflammatory condition with no known cure. The current gold standard of care typically requires surgery, but physicians have been seeking ways to reduce the number of invasive procedures used for diagnosis and treatments.
Now, a massive study of 84,885 people with endometriosis in Canada provides some help for people weighing how to manage the condition.
Olga Bougie, gynecological surgeon at Queen’s University, and her team tracked the long-term outcomes of surgeries in one of the largest, long-term cohort studies done on endometriosis treatment. They published their results in April in the Journal of Obstetrics and Gynecology
Bougie and team found that surgical treatment is not a guarantee that symptoms will disappear, especially for conversative surgeries. About 1 in 4 who underwent surgery that preserved both uterus and ovaries required repeat procedures to remove endometrial lesions that develop later. The numbers were much lower for people who had both organs removed in a hysterectomy.
“It’s important to counsel individuals who are not having a hysterectomy, letting them know there’s a risk of additional treatment and surgeries,” says Bougie.
Although hysterectomies reduce the need for additional surgical treatment, they come at the complete cost of fertility, a difficult choice for patients interested in having children.
Bougie says these findings are essential for physicians counseling people with the disease on treatment options and potential outcomes. “It’s important to have the conversation about patient goals with treating endometriosis,” Bougie says, in order to design a personalized treatment plan.
“Management has been shifting from a surgical disease -- surgery for diagnosis, surgery for management. That is not in the patient’s best interest,” says Bougie. Clinicians are increasingly using noninvasive approaches such as hormonal therapy and non-steroidal anti-inflammatory drugs as a first line of treatment for dealing with the disease’s chronic symptoms such as inflammation and pain.
Dan Martin, the scientific and medical director at the Endometriosis Foundation of America, admires the researchers’ work filling in gaps in knowledge on outcomes of endometriosis treatment. “It’s a really well-done population-based study. We never get population-based studies on endometriosis,” says Martin.
He believes this work can be used to help individuals who might think they have endometriosis when they consider potential strategies for dealing with the disease. However, he recommended careful review of the database used in this study because it was based off insurance coding. Such codes could leave out important information about the exact care that patients received, or physicians might have mis-coded symptoms as endometriosis when they were caused by another disease. “Big data can only answer what the computers were used to look at.”
Bougie says that the data used in the study is reliable for identifying endometriosis care. “The database included is of very high quality, giving a good snapshot of the population,” she says.
The new study provides a window into the outcomes of current “gold standard” treatment paradigms, showing that there is still immense room for improvement to prevent the trauma of reoccurring surgeries for a disease that typically requires lifelong care for chronic symptoms, says Bougie.
In the future, she says, clinicians will have better management strategies for patients with endometriosis. “There’s been a lot of improvements in the treatment of endometriosis, and in ten years we might be even better at treating this condition.”
Grace Wickerson is a Ph.D. student in materials science and engineering at Northwestern University. Their research focuses on the design and implementation of biodegradable, biocompatible therapeutic medical devices for chronic diseases. In addition, they are also working on public health policy efforts that address systemic racism in healthcare spaces and lack of access to the high-tech interventions they work on.
This story was produced as part of NASW's David Perlman Summer Mentoring Program, which was launched in 2020 by our Education Committee. Wickerson was mentored by Rich Monastersky.
Main image: Woman suffering from severe abdominal pain. Creative Commons, photo by Patricia W.
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