Here's What You Need To Know About Endometriosis

Illustrated by Marina Esmeraldo.
Yesterday Lena Dunham announced that she would not be doing press to promote this new season of Girls due to her endometriosis. Although she's written about having the chronic condition before, this is a too-rare reminder of how serious it can really be.

What is endometriosis? Normally, the lining of your uterus (or endometrial lining) grows inside your uterus over the course of your cycle and is shed if you don't become pregnant. But in endometriosis, that lining actually grows outside the uterus, on other parts of your body, usually on your reproductive organs, but it can grow throughout your abdomen.

Although the condition affects up to 10% of women in the U.S., women often struggle to get a diagnosis, partly because it can be an ordeal to get one. "Every individual manifests pain differently," says Carolyn Alexander, MD of the Southern California Reproductive Center. "One person may have very little endometriosis and have a lot of pain, while another person may have a lot of scar tissue and really severe endometriosis and very minimal pain."

Here's what you need to know about the condition.
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What are the first signs you might have endometriosis?
Excruciating abdominal pain is the most obvious sign, Dr. Alexander says. This can be pain that occurs a day or two before your period and feels like cramps. Your normal cramps might also hurt more. You may also have pain during sex or when going to the bathroom. Oh, and if that wasn't enough, endometriosis is also associated with (less severe) chronic lower-back pain.

Endometriosis can also cause irregular periods, unusually heavy periods, and fatigue. A doctor can presume that you have endometriosis based on all of these signs and a family history of the condition; Dr. Alexander says a laparoscopy procedure is the only way to be sure that's the culprit. That's "a small camera that goes into the belly button surgically," says Dr. Alexander. "From there, we can take a biopsy of the tissue and send it for pathology to show that it's endometriosis."

What causes endometriosis?
It's unclear. At this point, researchers have suggested that it may be caused by several different factors, including your estrogen levels, genetics, immune system, and the way your tissues shed during your menstrual cycle. Some researchers think that your endometrial cells may get unintentionally moved outside of the uterus during C-sections or hysterectomies, but Dr. Alexander says this conclusion is still controversial. Other things like having a low BMI and high alcohol intake can increase your risk for endometriosis, too, Dr. Alexander says, but it's not really clear why.

What are some of the effects of endometriosis?
Aside from the horrible pain, endometriosis is linked to infertility later on. "In fact, endometriosis can affect fertility in five different ways," Dr. Alexander says. First, it can make it harder for your fallopian tubes to catch the egg at ovulation. It can also make it harder for the embryo to stick inside of the uterus.

"The environment around the egg can also be a little different due to changes in the follicular fluid around the egg," she says. "And it can also affect inflammatory markers in the fluid inside the abdominal cavity." Finally, the egg quality can be different, she says. "But this can also be caused by age."

The condition is also associated with a slightly increased risk for — but doesn't necessarily cause — ovarian cancer, fibromyalgia, and chronic fatigue syndrome.

How is endometriosis treated?
Although there's no cure for endometriosis, your doctor can help manage the symptoms. That usually starts with hormonal birth control (if you're not already on it) to make your periods a little more regular — with less bleeding and pain. Dr. Alexander says other medication options include progesterone-only pills, possibly alongside an aromatase inhibitor, which can help with painful periods. There's also Lupron, another hormonal drug, which can cause symptoms of menopause. "But when our hands are tied and we don't know what else to do, this is a very helpful tool," she says.

If all of that fails, your doctor may recommend getting surgery to remove the endometriosis patches.

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