8 Things You Need to Know About This “Invisible” Women’s Health Condition

Endometriosis affects 1 out of 10 women worldwide.

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Extreme cramping, heavy bleeding and digestive issues—they're all just part of a normal period, right? Not so fast. They could be signs of a chronic condition called endometriosis.

Endometriosis is often described as an "invisible" disease, since the signs may mimic those of other health conditions. Plus, since endometriosis is tied to the menstrual cycle, many women grin and bear their symptoms.

But endometriosis (a.k.a. endo) is more than just a rough period. For women with this condition, the tissue that normally lines the uterus—the endometrium—grows outside of the uterus. Most commonly, endo patches find their way to the ovaries, fallopian tubes and pelvic organs. In some cases, they grow on the intestines, bladder, and, in rare cases, the lungs. These patches go through the same monthly cycle as the uterine lining, developing and then shedding.

“Endometriosis can cause chronic pain and significant scar tissue in the pelvis, which can really affect quality of life,” says Meghan Smith, MD, clinical instructor and reproductive endocrinology and infertility fellow at the University of South California Keck School of Medicine and Los Angeles County Hospital. Here, Smith lets us in on what you need to know about endometriosis.

Medically reviewed in August 2018.

Endometriosis is more than just bad cramps

2 / 9 Endometriosis is more than just bad cramps

“When you have endometriosis, every month when you have your period, your body expels the endometrium that lines your uterus,” says Smith. "The tissue that grows outside of the uterus bleeds, too, and can cause significant pain and cramping."

But it goes beyond that. Since the endometrial tissue outside the uterus doesn’t have anywhere to exit the body, it becomes trapped in the pelvic cavity and may lead to swelling, cysts and scar tissue. They can also create adhesions, causing your organs to stick together.

If you’re missing school or work because of your period pain, that’s not normal, and could imply there’s a bigger issue, says Smith. “Mild cramps are common, but if they require more than over-the-counter pain medication,” you should see your doctor. “Cramps that interfere with your daily life are another red flag,” she adds.

Depending on where the endometrial lesions are located, Smith says women may experience pain with sex, urination and bowel movements. Some women also develop:

  • Fatigue
  • Diarrhea
  • Constipation
  • Nausea and bloating similar to irritable bowel syndrome
Endometriosis affects 1 in 10 women

3 / 9 Endometriosis affects 1 in 10 women

Endometriosis is a common condition, affecting 1 in 10 women of reproductive age worldwide, or approximately 176 million women. It typically affects those between the ages of 15 and 49—but can begin as early as 11.

However, doctors and researchers involved with women’s health issues believe that the numbers are actually higher because many women go undiagnosed. The symptoms can be broad and vague, overlapping with many other health conditions. Plus, women may not seek medical assistance right away. They may normalize their pain, assuming that they’re just one of the “unlucky” ones who get bad periods every month.

Diagnosis can be tricky

4 / 9 Diagnosis can be tricky

Receiving a diagnosis for endometriosis can be slow. In fact, studies show that it takes, on average, between 7 and 12 years.

Part of that is the normalization of period pain. Another part is that pain doesn't always correspond to the number, size or location of the endo patches. Some women with few endo patches may have the most severe pain, while those with many areas of endometriosis growth may have minimal pain—which can make it hard to get the right answers.

The only definitive way to diagnose endo is through surgery, says Smith. “However, symptoms and ultrasound findings often provide enough evidence to tip doctors off, at which time they may begin treatment."

Endometriosis may contribute to infertility

5 / 9 Endometriosis may contribute to infertility

Women with endo are more likely to have difficulty conceiving. According to the American College of Obstetricians and Gynecologists, up to 40 percent of infertile women have the condition.

Smith says there are a few theories on how they influence each other:

  • The lesions and scar tissue from endometriosis may impair the fallopian tube’s ability to pick up the egg and transfer it to the uterus.
  • The inflammation caused by endometriosis may disrupt fertilization or cause the lining of the uterus to be less receptive to implantation.
  • Ovarian tissue may also be damaged if you have surgery to remove endometriosis patches, affecting ovulation.

The good news? Endometriosis does not equal infertility. Women with endometriosis can and do go on to have children—it just may take a little longer and they may need to be more closely monitored. Assisted reproductive technology, or fertility treatments, may be recommended by an OBGYN or reproductive endocrinologist.

Endometriosis is associated with ovarian cancer

6 / 9 Endometriosis is associated with ovarian cancer

Endometriosis is associated with a greater risk of ovarian cancer, especially among women with ovarian endometriosis. According to a Finnish study published in June 2018 in Obstetrics & Gynecology, women with ovarian endometriosis had an 81 percent increased risk for ovarian cancer. However, researchers haven’t found that cervical or other cancers are any more common among women with the condition.

Smith says that while studies show an association between ovarian cancer and endometriosis, it is not precancerous. “There are no clear recommendations that you should get screened for ovarian cancer if you have endometriosis,” she says.

Hormonal contraceptives can help

7 / 9 Hormonal contraceptives can help

While there is no cure for endometriosis, there are different treatment options. It can depend on whether or not a woman is planning to become pregnant. It’s important that you talk with your OBGYN about the option right for you.

Hormonal contraceptives like oral birth control pills and birth control patches are often the first line of defense against endometriosis (and painful periods, too). Since endometrial tissues respond to hormonal fluctuations linked to your period, taking birth control can help relieve your symptoms and pain.

“It keeps you hormonally quiet and you don’t have the build-up of the endometrial lining or at least not as great of a build-up,” says Smith. “It can prevent you from developing more lesions in the pelvis.”

If you can’t take estrogen, don’t worry. There are many different options to keep your hormones in check, such as progestin-only pills or injections or intrauterine devices containing progestin.

Can surgery help?

8 / 9 Can surgery help?

For women with severe pain who do not respond to medication or other therapies, surgically removing the endometriosis lesions may help. However, in 40 to 80 percent of women, pain is likely to return within two years. “If you still have your ovaries, you’ll still make hormones that cause the pain and cramping,” says Smith.

If other treatment options haven’t helped improve symptoms, a hysterectomy, or removal of the uterus, may be recommended as a last resort. This may be accompanied by an oophorectomy, or removal of the ovaries.

It’s important to know that removing the ovaries induces menopause, which can have a major impact on your overall health. Some research shows that women with premature or early menopause have a greater risk of bone loss, cardiovascular disease and cognitive impairment.

Endometriosis research and awareness is key

9 / 9 Endometriosis research and awareness is key

Researchers are actively working to understand the disease better, improving diagnostic tools, pinpointing biomarkers in blood and saliva and identifying gene patterns, all of which could help women get answers and treatment faster.

Some experts are also conducting clinical trials to find new treatment options to reduce endometriosis pain. In fact, in July 2018, the US Food and Drug Administration approved elagolix, the first-ever gonadotropin-releasing hormone antagonist formulated specifically to treat endo by blocking the production of estrogen. Talk with your doctor to learn if this new treatment is right for you.

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