Endometriosis

What Is Endometriosis? Symptoms, Causes, Diagnosis, Treatment, and Prevention

Beth Levine
By Medically Reviewed by 
Reviewed:
Medically Reviewed
Endometriosis is a chronic and often painful condition. The endometrium is the lining of the uterus; endometriosis happens when endometrial-like tissue grows outside the uterus on other organs, such as the ovaries, fallopian tubes, bowel, and outside walls of the uterus. Rarely, it can end up as far afield as the kidneys, bladder, or lungs.

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Signs and Symptoms of Endometriosis

Endometriosis symptoms may include heavy or painful periods, pelvic or abdominal pain, spotting or bleeding between menstrual periods, fatigue, diarrhea, constipation, and nausea or bloating, especially during menstruation.

In silent endometriosis, there are no obvious symptoms.

Some women with endometriosis experience severe pelvic pain that can interfere with everyday activities such as bowel movements, urination, and sexual intercourse, and can worsen during menstruation. The first sign or symptom for other women is difficulty getting pregnant.

Pain associated with endometriosis can vary widely from patient to patient. Some women experience no symptoms; others have severe pelvic pain or pressure. The severity of the disease is not related to the degree of pain. You can have an early-stage case and feel worse pain than someone whose disease is much more advanced.

Tamer Seckin, MD, an endometriosis specialist and the author of The Doctor Will See You Now: Recognizing and Treating Endometriosis, writes that your pain may relate to these areas:

  • Cramping and intense pain with menstruation that does not respond to nonsteroidal anti-inflammatory medications (NSAIDs) or birth control pills. Think intense, throbbing contractions. Or sudden, sharp, stabbing pains that may leave you breathless. Shireen Hand, a blogger for Endometriosis News, describes it as an “electric shock.” It may start before menstruation and not let up for several days. Some women refer to it as “killer cramps.”
  • A dull, throbbing pain around the time of ovulation.
  • GI distress, including bloating, gas, and cramps, sometimes accompanied by diarrhea and constipation. Symptoms are worse around menstruation.
  • Pain with sexual activity or orgasm. Hand writes that it feels like sandpaper, followed by sharp pains that radiate toward the abdomen.
  • Painful bowel movements or urination due to endometrial implants on or around the bladder or rectum.
  • Neuropathy because of swelling and scarring of tissue. This may cause sciatica (a sharp, burning, radiating pain down your leg, inner thigh, or back) that can make walking or even crossing your legs uncomfortable.

Learn More About Signs and Symptoms of Endometriosis

Causes and Risk Factors of Endometriosis

Experts aren’t sure exactly what causes endometriosis, but they have several theories about contributing factors or risk factors.

  • Genetics Endometriosis runs in families. Your risk is higher if one or more relatives have the condition.
  • Hormones Excess estrogen or dysregulation of the hormone stimulates growth of endometriotic implants.
  • Retrograde Menstrual Flow This “backward period flow” — in which some of the tissue shed during a period flows backward through the fallopian tubes and into the pelvis — is associated with endometriosis. On the other hand, most women experience this, and in a majority of cases, it doesn’t lead to endometriosis.
  • Low Prenatal Testosterone A lack of testosterone in utero may put some women at higher risk for developing endometriosis.

Other factors that may be associated with your risk of developing endometriosis include:

  • Starting your menstrual period at an early age
  • Short monthly menstrual cycles (less than 27 days)
  • Heavy menstrual periods that last more than seven days
  • If you have never given birth

How Is Endometriosis Diagnosed?

Early diagnosis and treatment are especially important because untreated disease will not go away. Without comprehensive treatment, endometriosis can cause chronic pain as well as scar tissue and infertility.

Getting an endometriosis diagnosis is not easy. Groups such as the Endometriosis Foundation of America estimate that it takes many women as long as 10 years to get a proper endometriosis diagnosis.

RELATED: Unrecognized Endometriosis: Despite 40 Years of Severe Pain Misdiagnosed as IBS, This Woman Didn’t Give Up

Diagnostic tools may include a pelvic exam and imaging tests such as an ultrasound or MRI. But a definitive diagnosis requires laparoscopic surgery, in which a doctor either observes tissue growths or removes a sample of tissue (biopsy).

Laparoscopic surgery is considered minimally invasive because the procedure avoids open surgery. While a woman is under general anesthesia, a thin tube with a video camera is inserted into the pelvis through an incision near the navel. The tube also contains surgical instruments. It lights up the internal cavity so the surgeon can see while using the instruments to remove a tissue or excise endometriosis lesions.

Learn More About Diagnosing Endometriosis: Tests and Screenings, Early Diagnosis, and Your Doctors

According to the classification system established by the American Society for Reproductive Medicine, there are four stages of endometriosis. Stage 1 is minimal, stage 2 is mild, stage 3 is moderate, and stage 4 is severe.

Staging is determined by location, depth, and size of the tissue. It’s important to note that this method of classification may not reflect the severity of symptoms.

Learn More About the Types and Stages of Endometriosis

Prognosis of Endometriosis

While endometriosis cannot be totally eradicated, patients can find a significant reduction of painful symptoms — and possibly even complete relief — through traditional and nontraditional treatments as well as diet and lifestyle modifications.

Some women may see an improvement in endometriosis after natural menopause, since it brings an end to the menstrual cycle and the body stops producing estrogen.

4 Causes and Risk Factors of Endometriosis

Here are the causes and risk factors you need to know when it comes to Endometriosis.
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Duration of Endometriosis

Currently, there’s no cure for endometriosis, but catching it early and fully excising the disease will likely prevent advanced, deeply infiltrative endometriosis.

Treatment Options and Medications for Endometriosis

If you suspect you have endometriosis, see your gynecologist first. If they aren’t able to help, look for an endometriosis specialist. Ask around. If you don’t know anyone living with the condition, look for referrals from other women with endometriosis in online forums or patient support groups, such as those at Endometriosis.org and Endo-resolved.

Learn More About How to Find an Endometriosis Specialist

Among other factors, appropriate treatments depend on age, the severity of symptoms, and if or when pregnancy may be desired. Don’t delay talking to your doctor about pelvic or lower abdominal pain or bad periods. You don’t have to endure these symptoms, and getting treated can help improve your overall health and quality of life.

Medication Options

While the disease cannot be totally eradicated, medication is typically the first option for reducing symptoms. Medication may include the following:

  • NSAIDs, to help relieve pain
  • Hormonal birth control
  • Hormone therapy
  • Gonadotropin-releasing hormone agonist (GnRH-a) therapy, which lowers estrogen levels and prevents menstruation (your period and your ability to get pregnant return once you stop taking this medication)

If you have severe pain from endometriosis, or you’re trying to become pregnant, laparoscopic surgery to remove excess tissue may help.

Alternative and Complementary Therapies

Complementary treatments such as stress management, acupuncture, and diet changes can help alleviate endometriosis symptoms.

  • Eating lots of fruits and veggies might reduce the risk of developing endometriosis.

     Fatty meats, full fat dairy, caffeine, and alcohol could also increase your risk, so limit or avoid these foods.

    In general, though, definitive research on the link between food and endometriosis is limited.
  • Acupuncture can reduce pain from endometriosis and blood levels of CA-125, a protein associated with the disease.

  • Exercise may be the last thing you want to do when experiencing pelvic pain, but some research suggests that it can help you manage symptoms and provide pain relief.
  • Biofeedback is an alternative therapy that teaches you how to reframe your response to pain. Find a trained practitioner at the Biofeedback Certification International Alliance or the Association for Applied Psychophysiology and Biofeedback.
  • Studies suggest that herbal extracts such as curcumin, puerarin, resveratrol, epigallocatechin-3-gallate (EGCG), and ginsenoside Rg3 may help reduce endometriosis lesions.

    It’s vital that you discuss any herbal supplements with your doctor, to avoid any interactions with other medications you’re taking.
  • Marijuana, now legal in many states, has shown the potential to reduce pain, nausea, and vomiting, and to improve sleep.

Learn More About Treatment for Endometriosis: Medication, Alternative and Complementary Therapies, Surgery Options, and More 

Prevention of Endometriosis

Since it’s not clear what exactly causes endometriosis, there’s currently no way to prevent it. High estrogen levels, however, have been consistently associated with endometriosis, and research shows that estrogen stimulates the growth of endometriotic tissue.

Lowering the estrogen levels in your body may help reduce the severity of symptoms. To keep circulating estrogen levels lower, the U.S. Department of Health and Human Services Office on Women’s Health suggests the following:

  • Consider using hormonal birth control such as pills, patches, or rings with lower doses of estrogen.
  • Exercise more than four hours a week. Regular exercise and a lower amount of body fat help decrease the amount of estrogen circulating through the body.
  • Alcohol raises estrogen levels, so limit yourself to no more than one drink per day
  • Limit caffeine, as research suggests that, for some people, there may be an inverse relationship between caffeine intake and estrogen levels, which can become an issue as caffeine intake increases to higher levels.

Complications of Endometriosis

Endometriosis can make it difficult for women to get pregnant. Almost 40 percent of women with endometriosis have fertility problems due to:

  • Inflammation from endometriosis, which can damage the eggs and interfere with the movement of eggs and sperm
  • Scar tissue from endometriosis, which can block the fallopian tubes (the tubes connecting the ovaries and the uterus)
Nonetheless, it’s still possible to get pregnant when you have endometriosis. Surgery to remove some of the endometrial-like tissue may help.

A number of other health conditions seem more common in women with endometriosis, but researchers are not quite sure how (or whether) these health problems are linked:

Research and Statistics: Who Has Endometriosis?

While endometriosis is considered a common condition, it’s difficult to know for sure how many women have it, because some women have no symptoms. The American College of Obstetricians and Gynecologists estimates that endometriosis affects about 1 in 10 women of reproductive age in the United States.

Endometriosis is most commonly diagnosed in women in their thirties and forties, but it can happen to any woman after menarche (your first period), and, rarely, even before that.

Related Conditions of Endometriosis

  • Bowel Endometriosis Bowel endometriosis can be especially tricky to detect. Bowel endometriosis, often misdiagnosed as irritable bowel syndrome, occurs when endometriosis lesions grow on the peritoneum (the membrane lining the inside of the abdomen and covering the abdominal organs), the rectum, the intestines, and other deeper bowel levels.

  • Deep Infiltrating Endometriosis In superficial cases of endometriosis, adhesions appear on the surface of organs; deep infiltrating endometriosis, on the other hand, is invasive, growing into the peritoneal tissues of the pelvic organ.
  • Miscarriage The risk of miscarriage may be slightly higher with endometriosis, but the data is not conclusive. The evidence on this subject is mixed; some studies have found an increased risk of miscarriage among women with endometriosis. Experts don’t understand the link; whether the increased risk is related to endometriosis-caused inflammation in the uterus, dysfunctional uterine contractions, or another factor isn’t clear.
  • Fertility Issues It’s a myth that women with endometriosis can’t get pregnant, but it is true that it may take them longer to achieve that goal.
The symptoms of endometriosis can easily be confused with other conditions, so it’s important to see your gynecologist or a specialist to obtain a correct diagnosis. The pelvic pain you feel could also be related to these conditions:

It may be surprising to hear that hip pain in women is not only caused by arthritis and bursitis. Gynecological issues such as endometriosis can also cause pelvic tenderness that some women identify as hip pain.

Resources We Love

Dr. Seckin Endometriosis and Pelvic Pain Blog

The blog of Tamer Seckin, MD, of the Seckin Endometriosis Center in New York City, provides news, education, and first-person blogs by patients. Dr. Seckin is the founder of the Endometriosis Foundation of America, an advocacy organization that offers information to patients, facilitates surgical training, and funds endometriosis research.

Endometriosis Association

This organization of women with endometriosis and healthcare providers focuses on education, support, and efforts toward finding a cure.

Endo-resolved

Run by an integrative health coach, this site features stories from women with endometriosis and offers advice on natural treatments, including diet and lifestyle changes.

Endo Black

Endo Black aims to provide a safe space for women of color to learn about endometriosis and connect them with a supportive community. Their website includes a blog, tips on managing the disorder, and links to endometriosis specialists.

Endometriosis Comprehension and Support

For information on treatment options and supportive interaction, check out this Facebook page.

Learn More About Endometriosis Resources

Editorial Sources and Fact-Checking

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