Endometriosis is an inflammatory disorder that affects the whole body.
“That’s one of the things that I like to emphasize with my patients,” says Jessica Opoku-Anane, MD. “Endometriosis is a whole body disorder. It causes significant pain and infertility, which are the two most common symptoms that we see. But it truly affects the whole body. And it can be debilitating for women and people assigned female at birth.”
Opoku-Anane is a minimally invasive gynecologic surgeon who runs the endometriosis center in Columbia University’s Department of Obstetrics & Gynecology.
Endometriosis happens when endometrial cells that line the inside of the uterus grow outside the uterus. These cells can move into many different places throughout the body, including the bowels, bladder, and lungs.
Most importantly, says Opoku-Anane, endometriosis causes a significant amount of inflammation, which can cause pain and other complications throughout the body, and infertility. It affects approximately one in 10 women and people who have a uterus. Millions of people are suffering with debilitating consequences of this inflammatory disorder.
“If you or someone you know is not able to have a normal quality of life, is missing school or work, having pain with sexual intercourse, or any normal activities of daily living are disrupted because of pain, that’s debilitation and it is not normal. See a doctor, and keep asking questions to get an answer,” says Opoku-Anane.
All of us should understand endometriosis
Ten percent of all women is a truly big number, says Opoku-Anane. These women’s lives and well-being are compromised. Women are part of families, they are part of workforces.
“It’s important everyone understands that so many people are trying to function normally in society without the resources and health they need to succeed,” she says.
Pain is not normal
“A problem in our society is the normalization of the pain women endure,” says Opoku-Anane. “It’s probably related to childbirth and the false thinking that women are better able to handle pain. But that’s a stereotype. Pain is not normal, especially at these levels. We have to fight against that stereotype to demand a better quality of life.”
Debilitating, painful periods are not normal. Chronic pelvic pain is not normal. If you or someone you know is having persistent, unexplained pain, Opoku-Anane says talk to your doctor and keep returning until you get the help you need. There is no reason someone should live in pain.
Endometriosis is commonly misdiagnosed
Despite how common it is, endometriosis is often undiagnosed or misdiagnosed as something else. “It’s picked up very poorly by tests and doctors,” Opoku-Anane says. “For most people, it takes more than 10 years to be diagnosed.”
Not only do people suffer needlessly for 10 years, they may have lost the opportunity to prevent severe debilitating pain and infertility. “There is evidence that treating endometriosis at an earlier age may prevent progression,” says Opoku-Anane.
Care for women with endometriosis
“We know that surgery and medical management is not enough. We must think more broadly about how we care for people who have endometriosis, including things like integrative medicine,” says Opoku-Anane.
It’s also important to encourage people with endometriosis to take care of themselves. Endometriosis can last until menopause for many women. Figuring out a way to incorporate self-care is important to managing this nearly lifelong condition.
Knowing the right questions to ask your doctor can help you get the treatment you need.
Questions to ask a doctor:
- Are my menstrual cycles normal?
- Should I be having chronic pain?
- Why do I have chronic pain?
- Are my periods too heavy?
- If they are heavy and/or painful, how do I plan for pregnancy and the future?
Endometriosis preventive measures
“Unfortunately, there are no methods we know to prevent endometriosis. We need more funding to have a better understanding of pathophysiology so we can offer patients more preventative treatments,” says Opoku-Anane.
Jessica Opoku-Anane, MD, is a minimally invasive gynecologic surgeon and assistant professor of obstetrics & gynecology at Columbia University Vagelos College of Physicians and Surgeons.
More: 3 Things Women Should Know About Fertility and Pregnancy