Over the past few years, several celebrities have opened up about having endometriosis, including Gabrielle Union, Julianne Hough and Lena Dunham, among others. But what is endometriosis? Yes, it usually involves a very painful period, but there’s a lot more to it than that.
And even with this increased awareness, people who menstruate are still struggling to find a diagnosis. They’re told by their mothers to “suck it up” or dismissed by their doctors. “It’s really important to note that a lot of women who don’t get diagnosed with endometriosis have seen a bunch of different providers,” Dr. Alyssa Dweck, a gynecologist, assistant professor at Mount Sinai and author of The Complete A to Z Guide for Your V tells SheKnows.
You best bet here is to be informed about your body and different aspects of menstrual health. Specifically, here’s what you should know about endometriosis.
1. Endometriosis is caused by tissue growing where it doesn’t belong
Endometriosis is when tissue that is similar to the lining of the uterus grows outside the uterus, which ends up causing inflammation, pelvic pain and potentially infertility, Dr. Ken Sinervo, a surgeon who specializes in endometriosis treatment and the medical director for the Center for Endometriosis Care tells SheKnows. According to the Mayo Clinic, endometriosis most commonly involves your ovaries, fallopian tubes and the tissue lining your pelvis, but, in rare circumstances, can spread beyond pelvic organs.
When a person has endometriosis, the uterine-like tissue acts as it would in the uterus where it belongs, meaning that it thickens, breaks down and bleeds with each menstrual cycle, the Mayo Clinic explains. The problem is, that unlike the uterine tissue that breaks down in your uterus and comes out during your period, there’s no way for this endometrial tissue in other parts of the body to get out — so it becomes trapped. This can cause surrounding tissue to become irritated, and eventually develop scar tissue and adhesions that can cause pelvic tissues and organs to stick to each other.
2. 10 percent of people with a uterus have endometriosis
When you think about it, endometriosis is pretty common. In fact, it affects one in 10 people with a uterus and is by far the most common cause of pelvic pain, according to Sinervo. Symptoms of endometriosis typically show up when a person starts to menstruate, although a few — about 10 percent — may not experience any issues until later on, if at all.
3. Endometriosis is more than just “bad cramps”
Yes, the most prominent symptom of endometriosis is bad menstrual cramps, but the condition involves a lot more than that. “These are women whose periods are taking over their lives. They miss school. They miss work. They’re literally incapacitated,” Dweck explains. “They complain that their uteruses are being squeezed, as if it’s a wet towel getting wrung out.”
Sometimes endometriosis causes other symptoms, too, like nausea, vomiting, pain during sex or bowel and urinary disorders, which might lead doctors to think another disease is to blame. Pain tends to start early in a person’s menstruation history, typically within the first five months of menarche. But diagnosis often doesn’t come until much later. “I definitely feel that most women start off having painful periods early on. Then in their teens, most of them get placed on birth control, which may make it better for a little while,” Sinervo says. “Eventually they end up getting diagnosed because their symptoms become more progressive or they have more symptoms present.”
4. The exact cause of endometriosis is still unknown
Doctors haven’t come to a single theory on what causes endometriosis, but there are a few popular ones. One theory is “retrograde menstruation,” where menstrual tissue flows backward through the fallopian tubes and implants outside the uterus. Another theory suggests that endometriosis is an autoimmune response, in part because women with endometriosis tend to have a much higher occurrence of other autoimmune disorders such as lupus and multiple sclerosis. The other widely believed theory, held by several specialists, including Sinervo, is that some people are born with endometriosis. “Once you start menstruating, you actually activate those cells and turn them on, and that’s when the endo starts to happen,” he said.
5. But endometriosis may be hereditary
Doctors do know, however, that there is some kind of genetic link. “We know that if you have a first-degree relative [who has endometriosis], it increases your risk significantly,” Sinervo explains. “So if your mother has it or your sister has it, you’ve got at least two or three times the chance of having it.” However, it’s not a direct line. Even in identical twins, he says, there is only a 35 to 40 percent chance of both twins having endometriosis. So, other factors also seem to play a part, though it’s currently unclear what they are.
6. Endometriosis is typically diagnosed via laparoscopy
The only definitive way to diagnose endometriosis is through laparoscopy. However, before your doctor gets to that point, they may also try a manual pelvic exam, ultrasound or MRI first to rule out other potential causes of your pain, according to the Mayo Clinic.
7. There are four stages of endometriosis
The disease is staged depending on the severity, from stage one to stage four, with stage one being a few lesions and stage four being deep endometrial implants in the pelvic lining and ovaries. Some people may stay at stage one indefinitely, and others may progress to further stages. This is one of the current frustrations of endometriosis, Sinervo notes: “We don’t know who’s going to have the disease potential to be stage four.”
8. If diagnosed, you’ll probably start off with watchful waiting
After diagnosis, patients and their doctors can make choices on how to proceed. For those with mild endometriosis or who are entering menopause, they might choose to do “watchful waiting,” which is delaying treatment and trying to manage symptoms. But menopause may not be the cure-all they’re hoping for. “Some women who go into menopause may still have some symptoms because of their endo,” Sinervo explains.
9. For others, medications might help
If diagnosed with endometriosis, your doctor might opt for drug therapies, such as birth control pills or a medicated IUD, and anti-inflammatory drugs, which may relieve symptoms. Some people may find more relief on drugs that simulate menopause, like Lupron, and others like letrozole, which help “prevent the conversion of weak estrogens to strong estrogens,” Sinervo says. More drugs may be coming that may work for more patients. But at best, these current drugs help calm symptoms, but don’t halt the progression of the disease or cure it.
10. Sometimes surgery is the best treatment option, but is still no guarantee the endometriosis won’t come back
According to the Endometriosis Foundation of America, the gold standard for endometriosis treatment is laparoscopic excision surgery, where any endometriosis tissue is removed. This is different from ablation surgery, where tissue might be cauterized or lasered away. While recurrence rates vary widely for endometriosis — anywhere from six to 67 percent, depending on the treatment — Sinervo says excision has a recurrence rate of just five to 10 percent. This is why he believes earlier intervention with laparoscopic excision, even in patients with mild disease, could lead to better outcomes.
11. Talk to your doctor if you think you might have endometriosis
Talk to your health care provider, but be ready to advocate for yourself. “I have many, many patients who have seen eight to 15 doctors before they’ve been diagnosed,” Sinervo says. Also, Dweck and Sinervo agree that education and awareness are power. The more you know about endometriosis and how it’s treated, the better your chances of getting an accurate diagnosis and treatment plan will be.
Additional reporting by Elizabeth Yuko.
A version of this article was originally published in January 2018.