Everything You Need to Know About Endometriosis

Growing up, were you told painful periods were par for the course? We’ve certainly joked about heating pads and fetal positions while soldiering through workdays with anti-inflammatories. But now that women’s reproductive health is coming out of the dark, we’re learning that recurring pain is not just part of being a woman.

Yet even with this increased awareness, women 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,” said gynecologist Alyssa Dweck, an assistant professor at Mount Sinai who most recently published The Complete A to Z Guide for Your V.

If you’re experiencing painful periods, here’s what you should know about endometriosis.

What is endometriosis?

“It’s 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,” said Dr. Ken Sinervo, the medical director for Center for Endometriosis Care and a surgeon who specializes in endometriosis treatment. The disease affects 1 in 10 women and is by far the most common cause of pelvic pain, according to Sinervo. Women most often have symptoms when they first start to menstruate, although a few — about 10 percent — may not experience any issues until later on, if at all.

The pain goes far beyond “normal” menstruation cramps. “These are women whose periods are taking over their lives. They miss school. They miss work. They’re literally incapacitated,” Dweck said. “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 woman’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 said. “Eventually they end up getting diagnosed because their symptoms become more progressive or they have more symptoms present.”

What causes endometriosis?

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 — which occurs in up to 90 percent of all women — 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 women 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.

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 said. “So if your mother has it or your sister has it, you’ve got at least two or three times 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.

How it’s diagnosed and treated

The only definitive way to diagnose endometriosis is through laparoscopy. 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 women may stay at stage one indefinitely, and others may progress to further stages. This is one of the current frustrations of endometriosis, Sinervo said. “We don’t know who’s going to have the disease potential to be stage four.”

After diagnosis, patients and their doctors can make choices on how to proceed.

Watchful waiting

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, Sinervo said. “Some women who go into menopause may still have some symptoms because of their endo.”

Drugs

They might choose to do drug therapies, such as birth control pills or a medicated IUD, and anti-inflammatory drugs, which may relieve symptoms. Some women 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 said. 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.

Surgery

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. Where recurrence rates vary widely for endometriosis — anywhere from 6 to 67 percent, depending on the treatment — Sinervo said excision has a recurrence rate of just 5 to 10 percent. This is why he believes earlier intervention with laparoscopic excision, even in patients with mild disease, could lead to better outcomes.

What to do if you think you may have endometriosis

Talk to your health care provider, although you should be ready to advocate for yourself. “I have many, many patients who have seen eight to 15 doctors before they’ve been diagnosed,” Sinervo said. Also, Dweck and Sinervo agree that education and awareness are power. “The more you know about endo and the more you know about how it’s treated is going to greatly affect the number of potential surgeries you have and your chances of avoiding unnecessary surgeries — and unnecessary medical treatments.”

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