Whoa, this is surprising: According to the U.S. Department of Health & Human Services, endometriosis affects one in ten women of reproductive age in North America. But for a disease that so many women have, lots of people (ourself included) know very little about it. That’s why we checked in with OBGYN Dr. Rebecca Brightman, to learn the basics and clear up some common misconceptions. Here’s what she told us.
What is endometriosis? Endometriosis is the presence of small pieces of tissue (known as implants) that are found outside the uterus. They look similar to the tissue that’s normally found within the uterine lining, and like that tissue, can undergo changes or become inflamed during the course of a woman’s cycle. This, Dr. Brightman says, can result in “a constellation of symptoms which can vary from one woman to the next.”
What are the typical symptoms? First and foremost, extremely painful periods. “The typical woman with endometriosis is absolutely incapacitated,” Dr. Brightman adds. Other symptoms can include pain when you’re not on your period, heavy periods, bleeding in between periods, painful sex, painful urination or painful bowel movements.
What should you do if you think you have it? Speak up. Dr. Brightman says that it can take the average woman with endometriosis six to ten years suffering with symptoms before they’re accurately diagnosed, since many women chalk these symptoms up to being a woman who’s menstruating. This quiz on SpeakEndo.com—an organization Dr. Brightman works with—can help determine if you should see a doctor.
How is it diagnosed? Historically, Dr. Brightman says, the gold standard of diagnosis was surgical—taking a look laparoscopically or via an incidental finding (when a doctor notices something during an unrelated surgery). Ultrasound results are also often used as part of a diagnosis, since some women form cysts that sonographically look like endometriosis. “If I’m personally taking care of a patient with the symptoms we discussed and the ultrasound findings, I don’t feel that I need to operate on her before I diagnose and then recommend an appropriate course of treatment,” Dr. Brightman says.
What’s the prognosis? An important thing to keep in mind: Endometriosis isn’t a one-size-fits-all disease, and every case is very different. “For some women, treatment means putting them on birth control pills until they’re ready to get pregnant,” she says. “For others, lifestyle modifications like nutritional changes and exercise will make them feel better. Some women do need surgery, but everyone’s really different.” After Lena Dunham opened up about having a hysterectomy to treat her severe endometriosis, Dr. Brightman says it’s important for women to know that major surgery like that is far from the norm. “I’ve been practicing—if you include my training—for over 30 years, and it’s pretty unusual for someone to need a hysterectomy for severe endometriosis.” She says that women shouldn’t let fears of the worst-case treatments stop them from seeking help.
What’s the most common misconception about endometriosis? The one thing women should know about endometriosis, according to Dr. Brightman, is that it doesn’t always (or even usually) mean that you’ll have fertility problems. “If you look at the math, one in ten women have endometriosis, yet one in ten women don’t have trouble getting pregnant,” she says. “The majority of women with endometriosis do not have any issues getting pregnant, and women need to know that—I can’t stress it enough.”
Basically, when it comes to your health, if you feel something, say something. Dr. Brightman agrees: “I think one of the things that I try to stress is, we are not mind readers as physicians and healthcare providers, so if something’s on your mind, you should really feel comfortable verbalizing it, because we’re not perfect.”