Fact: During their reproductive years, around 176 million women in the world are affected by endometriosis, a gynecological disease that can lead to infertility, according to the World Endometriosis Research Foundation. And it’s often misdiagnosed, says Shari Brasner, M.D., assistant clinical professor of obstetrics, gynecology, and reproductive science at Mount Sinai School of Medicine. “The symptoms overlap with so many other common conditions, that we often don’t go to the label of endometriosis,” she says.
And since March is Endometriosis Awareness Month, there’s no better time to arm yourself with knowledge of this disease. Here, 6 common FAQs about endometriosis:
What is endometriosis?
“Endometriosis is when the lining of the uterus is growing in places it’s not supposed to be,” says Jeffrey Nelson, MD, DO, FACOOG, from HRC Fertility in Southern California. This lining, called the endometrium, builds up throughout the course of your cycle each month in preparation for a fertilized egg, which will attach to the lining and grow into a fetus. But in the months when the egg doesn’t get fertilized, the hormones in your body drop, causing the endometrium to break down and shed from the uterus—resulting in your period.
In some women, however, parts of the endometrium lining end up backing up into the pelvis, rather than coming out of the vagina. “Some of it goes backwards into the Fallopian tubes and ends up in the pelvis,” Nelson says. “There’s retrograde flow of the menstrual fluid—including little bits and pieces of that tissue that end up in the pelvis during the period. In most people, that tissue and liquid are reabsorbed, but in some people, they will find places to attach and start to grow.”
When the endometrium lining ends up in the pelvis, it can attach itself to the bowels, the uterus, the ovaries, and the Fallopian tubes, where it can start to grow. The more it grows, the more trouble you’ll have with conception.
What are the symptoms of endometriosis?
The standard symptoms of endometriosis are pain (cramps) during your period and the inability to conceive—or the combination of the two. And the pain can sometimes be a serious burden—even in your work life. A 2010 study found that women with endometriosis lost an average of ten hours of work productivity per week due to painful symptoms. “There are definitely women who are incapacitated by their cramps,” says Brasner.
But take note: You don’t have to have period pain in order to have endometriosis. Some women can have severe endometriosis and experience no pain at all, according to Nelson. That said, experiencing pain during your period that gets worse and lasts longer from one period to the next might be an indication of endometriosis, he says, though the only way to know for sure is by having a surgical diagnosis.
Other possible warning signs to look out for: chronic pelvic pain, pain during sex (particularly during deep thrusts), diarrhea, nausea, and in extreme cases, rectal bleeding and blood in the urine, according to Brasner. However, these could all indicate other medical problems, she says, but if any of these happen during your period, then it might be endometriosis. “It has to be cyclic,” she says. “It’s not all month; it’s related to the menstrual cycle.”
What are the side effects of endometriosis?
Beyond the pain mentioned above, the endometrial implants (or the “bits and pieces” of tissue from the endometrium that have attached somewhere in the pelvis) release chemical factors that cause a toxic environment in the pelvis, making it harder for people to conceive, according to Nelson. “We think it might impact how well eggs and sperm can recognize and interact with one another appropriately to fertilize and form an embryo,” he says. Also, in more severe cases of endometriosis, inflammation and scar tissue can develop. “If you have a lot of scar tissue, when a woman releases an egg to ovulate, the egg has a hard time finding its way around the scar tissue to be picked up by the Fallopian tubes,” Nelson adds. “Mechanically, if there’s a lot of scar tissue, it makes it hard to get pregnant.”
What are the treatment options for endometriosis?
The easiest way to try and treat endometriosis-related pain—at least the less severe pain—is to take an anti-inflammatory, like ibuprofen, says Brasner. She recommends starting to take it a day or two before your period begins. Another option: hormonal contraceptives. “Hormonal contraceptives suppress ovulation,” she says. “Anything that helps suppress the action of the endometrium, since that tissue is so productive, is going to help.” The downside? The results don’t last forever. Many of them will reverse when you stop taking whatever medication you’re on, according to Brasner.
The absolute last resort would be to surgically remove your ovaries in a procedure called a hysterectomy. But Brasner says that this is rarely done since it puts women into an immediate menopause, is completely irreversible, and will leave you biologically unable to have children for the rest of your life.
Can you still get pregnant if you have endometriosis?
Though treatment depends on the severity of the endometriosis, Nelson says that the most effective (but not the only) way to try to get pregnant if you have the disease is via in vitro fertilization. That said, there is a less “aggressive” option to try prior to resorting to IVF: Taking medication that will help you grow more eggs, and then taking your husband’s sperm to try intrauterine insemination. If that doesn’t work after three or four attempts, IVF is the next step, says Nelson. Surgery to try to eliminate the endometriosis is also a possibility, though Nelson says that it doesn’t seem to improve things (from a fertility standpoint) as much as was previously thought. The bottom line: “Which of these is most appropriate depends upon you being evaluated by your physician, looking at the particulars, and making the decision,” says Nelson.
What if you’re diagnosed with endometriosis and want to get pregnant down the line? What can you do now?
Going on birth control might be your best option. “There is a reason to consider suppression with birth control pills,” says Brasner. “We really believe birth control plays a role in keeping endometriosis from progressing. It’s not only for current symptom management, but for progression as well.”
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