Everything To Know About Endometriosis: Symptoms, Research, And Prevention

Endometriosis is a disease that infects the uterus. According to the Endometriosis Foundation of America, at least 176 million people worldwide have this disease. However, many cases remain undiagnosed because although patients may show symptoms, they don’t realize that anything is wrong.

Endometriosis is a serious condition. It may cause pain and infertility, and it may require surgery to diagnose. Here is everything you need to know about endometriosis, including what it does, how to treat and prevent it, and all the latest research.

What Is Endometriosis?

Diagram shows endometriosis outside of the uterus, ovaries, and fallopian tubes.

Endometriosis is a disease that infects the “endometrium,” the tissue that lines the uterus. During menstruation, this tissue sheds and exits the body if the person is not pregnant. But during endometriosis, the endometrium grows outside of the uterus.

According to UCLA Health, the uterine lining usually appears on organs in the pelvis and lower abdomen. However, endometriosis could occur anywhere. This abnormal tissue growth could cause pain, but it could also produce no symptoms at all.

The Causes Are Unknown

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Valery MatytsinTASS via Getty Images

According to John Hopkins Health, the causes of endometriosis are unknown. One theory, called “reverse menstruation,” suggests that tissue somehow travels back up the fallopian tube and into the abdomen. The tissue may spread through blood or other channels, similar to cancer cells.

Another theory is called “retrograde menstruation.” In this theory, blood and tissue slip through an abnormal cavity in the fallopian tubes and travel through the blood. This could explain how the endometrium appears in odd spots such as the knees or thumbs.

People Are At Higher Risk If…

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Shutterstock/Ed Meden
Shutterstock/Ed Meden

Although scientists haven’t determined the cause of endometriosis, they know which circumstances give people a higher risk. For instance, surgery can spread the growth of tissue, especially a C-section. In that case, endometriosis could occur in the scar.

UCLA’s gynecologists suggest that a woman’s immune system could impact their risk of endometriosis. Although retrograde menstruation is a potential cause, nearly all women experience it at some point. But only a certain number of people develop endometriosis.

Other Risk Factors

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marka/Universal Images Group via Getty Images

Unfortunately, people can’t control all the risk factors that contribute to endometriosis. According to a 199 review in American Family Physician, most patients are between 25 and 29 at the time of diagnosis. However, women who give birth after age 30 have a slightly higher chance of experiencing endometriosis.

As with most conditions, people with a family history of endometriosis are more likely to have it. Women with an abnormal uterus are also more likely to have the condition.

The Four Stages Of Endometriosis

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BSIP/Universal Images Group via Getty Images

Doctors classify endometriosis into four stages: minimal (the first), mild (the second), moderate (the third), and severe (the fourth). The stage depends on the location, severity, pain, and depth of endometriosis.

According to WebMD, scar tissue usually doesn’t occur until stage two. Moderate endometriosis, or stage three, may cause cysts in the ovaries or adhesions (thick bands of scar tissue). Stage four is widespread and may cause larger cysts and thicker adhesions than other stages.

When Patients Experience Pain

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For many people, endometriosis means pain. The pain occurs when the misplaced uterus tissue bleeds. When the blood touches other organs, it inflames the area and causes pain. The most acute pain often occurs in the abdomen.

Unlike other conditions, the stage of endometriosis does not affect the pain experienced. For instance, someone with stage one may hurt more than someone with stage four. The pain depends on where the endometriosis is located and whether scar tissue develops.

What Are The Symptoms?

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Patients with endometriosis may notice symptoms during their periods. The conditions may cause excessive cramps or abnormally heavy flow. During menstrual periods, patients may experience pain while using the restroom. Others may feel pain during intercourse.

Other symptoms may be gastrointestinal, including nausea, diarrhea, constipation, bloating, and fatigue. However, some patients never experience symptoms, and the severity of the symptoms does not always indicate the severity of the condition or which stage it is. There is one exception: infertility.

Endometriosis And Infertility

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BSIP/Universal Images Group via Getty Images

It’s no secret that people with endometriosis may struggle to become pregnant. According to the American Society for Reproductive Medicine, around 30% to 50% of women with endometriosis may become infertile. That said, most patients are still able to conceive within a few years.

Endometriosis affects fertility in several ways. It could twist the pelvis or fallopian tubes through scarring. Ovarian eggs may become altered by hormonal changes in the uterus, or the fallopian tubes may become blocked. As the stages progress, the patient is more likely to develop infertility.

Pregnancy And Endometriosis

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Contrary to a widespread myth, pregnancy isn’t a “cure” for endometriosis. Women can get pregnant while having endometriosis, and they can deliver a healthy baby. However, they may experience complications during pregnancy.

Pregnant women with endometriosis have a higher chance of premature birth, according to a 2009 study by the European Society of Human Reproduction and Embryology. Plus, they have a greater risk of antepartum bleeding and pre-eclampsia, a high blood pressure condition. Pregnant mothers with endometriosis need to be closely monitored.

A Chronic Condition

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Once someone has endometriosis, it becomes a long-term problem. Most cases last until menopause. Patients may temporarily pause the condition through pregnancy or oral contraceptives that stall their periods. But after someone is diagnosed, they require medical treatment.

This is why a diagnosis is necessary. Most doctors diagnose endometriosis through tests such as an MRA or ultrasound. They may also perform a pelvic exam, where a doctor examines the outside and inside of the patient’s vagina.

How Common Is Endometriosis?

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Although endometriosis is well-documented, researchers still aren’t sure how common it is. Because some patients don’t show symptoms, endometriosis is a tricky disease to find. In 2011, a study in Fertility and Sterility found that 11% of women who were undiagnosed unknowingly had the disorder.

According to the charity Endometriosis UK, around one in ten women in the United Kingdom have endometriosis, while 10% of women are diagnosed worldwide. At least 176 million women worldwide have or have had the disease.

Showing Symptoms, But Still Undiagnosed

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BSIP/Universal Images Group via Getty Images

Although some patients don’t show symptoms, others do–but fail to treat it. Because intense period pain is a frequent symptom of endometriosis, some patients may believe that it is normal, according to the World Endometriosis Organization.

Severe menstrual pain is not just “part of being a woman” or “in their head.” According to scientists at the University of Utah, women should see a doctor if menstrual pain interferes with everyday life. If the pain does not respond to medicine, it may be more than just cramps.

It Can Be Caught Early (And Potentially Prevented)

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BSIP/UIG Via Getty Images

Contrary to popular belief, endometriosis does not only occur in older women. Teenagers can also suffer from it, and adolescents with chronic pelvic pain are at a higher risk of contracting the condition. The Global Study of Women’s Health found that some women even show signs during their first period.

In 1999, Dr. Marc Laufner of the Children’s Hospital in Boston analyzed teenagers with chronic pelvic pain. If they were not treated with an oral contraceptive or anti-inflammatory, they had a much higher risk of endometriosis–up to 70%!

Diagnosis Through Surgery

Illustration of endometriosis treament shows a probe that repairs the lesions using ultrasound.
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Jacopin/BSIP/Universal Images Group via Getty Images

While performing a pelvic exam, doctors search for several signs. Harvard doctors explain that they search for displaced organs and tissues. They also determine if your pelvic organs can be moved. If they find these signs, they may perform a laparoscopy.

A laparoscopy involves a small incision in the abdomen, and a camera goes in to look inside the uterus. Through the camera, doctors can search for markers of endometriosis. Patients are asleep throughout the entire procedure.

But Diagnosis Isn’t Always Easy

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BSIP/Universal Images Group via Getty Images

The symptoms of endometriosis often mirror the symptoms of ovarian cysts, irritable bowel syndrome, and pelvic inflammatory disease. As a result, doctors may have a hard time diagnosing the condition. Researchers at Georgetown University reported that only 24% of women with pelvic pain get diagnosed with endometriosis.

Plus, ovarian cysts are a common side effect of endometriosis in the abdomen. Potentially, doctors could tackle the cysts without noticing endometriosis. Many people with the condition may remain undiagnosed.

Endometriosis Could Occur In…

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BSIP/Universal Images Group via Getty Images

Although most people experience endometriosis in the abdomen, the exact location varies. Harvard Health lists the most common locations for endometriosis: the ovaries, the outside of the uterus, and the pelvis. It could also appear in spaces between the bladder, rectum, and uterus.

Endometriosis may become dangerous outside of the abdomen. Cases have occurred in the intestines and appendix, which heightens the risk of infection. If endometriosis reaches the lungs, patients may struggle to breathe or cough.

How Do You Treat It?

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BSIP/UIG Via Getty Images

Currently, there is no cure-all treatment for endometriosis. Patients may manage symptoms with pain medications, hormonal therapies, and fertility treatments. In some cases, surgery may remove the abnormal cell growth that causes the most pain.

Some may believe that a hysterectomy may end the condition. However, endometriosis causes endometrial-like tissue to grow outside of the uterus. Unless the abnormal tissue growth only occurs in the fallopian tubes, a hysterectomy will not get rid of the symptoms.

How Hormonal Treatments Help (But Don’t Cure)

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Kirk McKoy/Los Angeles Times via Getty Images

Some people mistakenly believe that hormonal treatments can cure endometriosis. Because endometriosis is not a hormonal condition, no oral contraceptive will defeat it. But it can help.

According to the National Institute of Child Health and Human Development, hormone treatments help by slowing ovulation. In turn, endometrial lesions occur less frequently, so they won’t attach to other surfaces and cause pain. Although the scars caused by endometriosis won’t go away, hormonal medications may reduce the pain and prevent spreading.

Even Surgery Is Short-Term Relief

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Kirill KukhmarTASS via Getty Images

Research in the journal Human Reproduction Update explains that surgery can provide relief, but it does not cure endometriosis. Although the scarring and abnormal growth will go away, the uterine lining will continue to go outside of the uterus. Plus, surgeries may result in infertility or pregnancy complications later on.

The US Department of Health recommends either a laparotomy or neurectomy. During a laparotomy, surgeons remove endometriosis tissue from the uterus. Neurectomies (depending on the type) sever nerves in the abdomen to soothe the pain.

How Endometriosis Impacts Life

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BSIP/UIG Via Getty Images

In 2008, the World Endometriosis Research Foundation began a five-year-long study on patients with endometriosis. They wanted to see how the condition affects everyday life. In the end, around 50% of participants said that endometriosis had negatively affected their relationships.

Throughout the study, patients’ symptoms persisted. Between 50% and 60% of participants continued to experience pelvic pain, terrible menstrual cycles, and painful intercourse. Many reported that their overall quality of life had depreciated because of endometriosis.

The Cost Of Endometriosis Is High

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Joe Raedle/Getty Images

In 2012, research called the EndoCost study interviewed over 900 endometriosis patients in ten countries. They observed that most of the cost of endometriosis did not stem from healthcare. On average, patients spent over $4,000 per year on healthcare–and over $8,000 from missing work!

The World Endometriosis Research Foundation noted that the cost of treatment is the same as Crohn’s, diabetes, and arthritis. However, endometriosis has much less research due to fewer funds. As a result, patients suffer from more symptoms and frequently have to miss work.

Recent Research Hints That There May Be A Cure…

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George Frey/Getty Images

Although a cure for endometriosis has not been found, new research is quickly paving the way to a solution. At the Society for the Study of Reproduction Conference in 2019, researchers explained a previously-unknown link to endometriosis: immune cells.

Endometrium tissue creates a unique environment that affects hormones and the immune system. Júlia Vallvé Juanico, a professor at the University of California, San Francisco, demonstrated that some immune cells stimulate the condition. This discovery could lead to a cure or prevention down the line.

Possible Prevention Through Genes

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Although the cause of endometriosis is still unknown, scientists at Yale suggest that genes could have something to do with it. In 2014, they released research explaining that patients with endometriosis have the repressed genetic precursor microRNA Let-7ba. Through gene therapy, scientists could un-repress the gene.

During the study, scientists were able to prevent endometriosis in mice. Although more research needs to be done before performing this gene therapy on humans, this explains why endometriosis seems to be hereditary.

For Patients, There Is Hope

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BSIP/Universal Images Group via Getty Images

Registered Nutritionist Nancy Peterson, who runs a Facebook group for people with endometriosis, says that many patients resign themselves to a lifetime of pain. However, this doesn’t necessarily have to be the case. Peterson says that in her 30 years of helping patients, she has seen “dramatic relief” since the mid-1980s.

Current research offers more medications, surgeries, and lifelong treatment than ever before. In June of 2018, endometriosis received federal funding from the US Department of Defense for the first time in history. Progress is rapidly being made.

Diet May Lower The Risk Of Endometriosis

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The Endometriosis Foundation argues that nutrition and the condition “go hand-in-hand.” However, studies on the relationship have conflicted. In 2011, a British study found that dairy and fat lower the risk of endometriosis, while 2018 research in the Annals of Translational Medicine found that red meat was a risk factor.

Oddly enough, the British study found that fruit with beta-carotene worsened the risk of endometriosis. This contradicted other studies that suggested that fats heightened the risk of disease.

What Should You Eat, Then?

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BSIP/Universal Images Group via Getty Images

In 2018, research in the Journal of Endometriosis and Pelvic Pain Disorders documented what to eat for prevention. After analyzing several studies, they noted that inflammation raises the risk of endometriosis.

Most studies pinpointed chronic inflammation as the main culprit. However, people can delay the progression of endometriosis through their diet. If they get the disease later on, an anti-inflammatory diet may prevent escalation and lower their pain.

Certain Fats Matter

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Scott Olson/Getty Images

Fats in food influence the risk of endometriosis, for better or for worse. In 2010, research in Clinical Endocrinology News found that a diet high in trans fat raises the risk by 48%. On the flip-side, a diet high in omega-3 fatty acids lowered the risk of endometriosis. This diet included healthy salad dressings, mayonnaise, and fatty fish.

According to the researchers, every 1% of energy from omega-3s decreased the chances of endometriosis by 50%. Dr. Stacey Missmer, the study’s lead author, stated that animal fat did not affect endometriosis risk.

Eat More Plants

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ROMEO GACAD/AFP via Getty Images

Phytoestrogens are plant compounds found in fruits, vegetables, and other plant products that have an anti-inflammatory effect. According to an Iranian study in the International Journal of Fertility & Sterility, these compounds lower the risk of endometriosis. Some of the most significant phytoestrogens for endometriosis were found in beans and soy.

One of the phytoestrogens, isoflavone, has been shown to soothe inflammation. In 2009, research in Cancer Causes & Control noted that eating more isoflavones lessens the risk of endometriosis.

Green Tea Is Unique

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Antioxidants can reduce the risk of disease by stopping free radicals, which cuts down on inflammation. One source of unique antioxidants is green tea. Specifically, green tea offers epigallocatechin-3-gallate, which has diminished the risk of endometriosis in studies.

In 2011, research in Fertility and Sterility found that green tea’s antioxidants stopped the growth of endometriosis cells. Other antioxidants, such as vitamin E, did not have that effect. In 2014, an Oxford study noted that epigallocatechin-3-gallate has the potential to prevent or even treat endometriosis.

Curcumin In Turmeric May Help

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Tom Stoddart/Getty Images

Curcumin, the chemical in turmeric that makes it bright yellow, has many health benefits. Recent research suggests that it could help prevent endometriosis. In 2013, one study reported that curcumin limits the production of the endometrial gland, which stops abnormal tissue from growing.

A 2020 animal study backed up these findings. According to the Journal of Materials Science: Materials in Medicine, curcumin lowered endometriosis lesions and inflammation in mice. Although more research is required, turmeric could be helpful for endometriosis.

Nuts And Berries

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Some studies indicate that reservatrol, a natural substance in some plants, may reduce the chance of developing endometriosis. Research in Gynecological Endocrinology found that reservatrol can lower two enzymes, MMP-2 and MMP-9, that are crucial in forming endometriosis. Reservatrol also alleviates inflammation.

Reservatrol is found in grapes, blueberries, raspberries, peanuts, and pistachios. Although resveratrol requires more research, it shows promise in studies involving endometriosis patients. And there’s nothing wrong with a diet of healthy berries and nuts.

Vitamin D

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Although researchers have found few vitamins that inhibit endometriosis, vitamin D is an exception. During the Nurse Health Study, which analyzed over 69,000 participants, researchers found that women with diets high in vitamin D had a 24% lower chance of developing endometriosis.

A later study in Metabolism stated that, although vitamin D deficiency may not be a cause of endometriosis, it could contribute. The vitamin has anti-inflammatory abilities that tackle endometriosis cells. Foods with vitamin D include cheese, eggs, fatty fish, and dairy products.

Patients May Try Going Gluten-Free

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Daniel Karmann/picture alliance via Getty Images

Although gluten-free diets are only required for people with celiac disease, some research has suggested that it could help endometriosis patients as well. In 2012, Italian researchers observed over 200 women with endometriosis. They reported that a gluten-free diet reduced symptoms in 75% of patients.

Three years later, another study compared patients on medication to patients with both medication and a gluten-free diet. Those on a gluten-free diet experienced less pelvic pain. The diet does not impact prevention, but those who already have the condition.