Who Is Most at Risk of Endometriosis?

Endometriosis is a condition in which endometrium-like tissue—similar to the tissue that lines the uterus—grows outside of the uterus in places such as the fallopian tubes and ovaries. The condition can be extremely painful and sometimes results in fertility issues.

People who want to get pregnant or who have a family history of endometriosis may wonder if they're at risk for the condition. We talked to experts about risk factors for endometriosis and if there are any steps people can take to mitigate that risk.

The at-risk population

Endometriosis mostly affects women ages 15 to 49 but also can affect men, though not with any frequency.

In rare cases—16 documented cases to be exact—endometriosis has been diagnosed in cisgender men, according to a 2018 report in the journal Case Reports in Obstetrics and Gynecology. In these situations, the cause is thought to be exposure to estrogen. While uncommon for men, estrogen therapy is sometimes used to treat prostate cancer and improve testosterone deficiency.

Much more common is endometriosis in women.

"Endometriosis affects 10 to 15 percent of women in their reproductive age," said Thais Aliabadi, M.D., a board-certified OB-GYN in Beverly Hills, California, and the founder of the weight-loss practice Trimly.

The condition does not discriminate and has no racial predisposition, according to Dawn K. George, M.D., a board-certified OB-GYN at MOMZ Ob/Gyn in Homestead, Florida.

While there is some familial association, George added that there is no known genetic link like there may be with conditions such as cystic fibrosis or sickle cell anemia. She called it a polygenic-multifactorial mechanism. Multifactorial inheritance refers to traits caused by a mixture of inherited, environmental and unknown factors.

It all means the exact cause of endometriosis is unknown.

Even so, first-degree relatives of women with endometriosis have a five- to sevenfold increased risk of diagnosis, Aliabadi said. Women whose family members have been diagnosed with endometriosis should get evaluated by their OB-GYN.

Women who have never given birth are also at a higher risk for endometriosis. When a woman is pregnant, her menstrual cycle stops and she's exposed to less estrogen for that time. Lower levels of estrogen lower the risk for endometriosis, as endometrium-like tissue needs estrogen to grow.

This is why women who go through menopause are no longer at risk for the condition, unless they are taking estrogen supplements.

"Other risk factors are early onset of menses, shorter menstrual cycles, heavy bleeding, autoimmune disease and smoking," Aliabadi said. "Additionally, women who have certain genetic mutations or immune system disorders may be at an increased risk for endometriosis. However, it is important to note that anyone who has menstruation can develop endometriosis."

Preventing endometriosis

Unfortunately, not a lot can be done to prevent endometriosis. Fully preventing the condition is difficult since the exact cause is unknown.

"Endometriosis is a chronic gynecologic disorder manifested as chronic pain and infertility," George said. "It affects the attachment and implantation of endometrial tissue—glands and stroma—on the peritoneum via retrograde menstruation [when the period flows upward through the fallopian tubes]. Given this, there are no ways to minimize risk."

Once diagnosed with endometriosis, however, you have many ways to mitigate your symptoms.

"The most common symptoms of endometriosis are pain and infertility," Aliabadi said.

Other common symptoms include the following:

• Pelvic pain similar to symptoms of a urinary tract infection (UTI)
• Genital pain during or after sex
• Severe and often debilitating menstrual cramps that sometimes worsen over time
• Heavy periods and spotting between periods
• Pain in the intestines or lower abdomen
• Bloating

"You can't prevent endometriosis, but you can modify your lifestyle to help reduce your symptoms," Aliabadi added. "For example, exercising regularly, quitting smoking and minimizing alcohol intake can help minimize and manage symptoms."

Heating pads, warm baths and over-the-counter pain medications can also help mitigate the pain.

When to see a doctor

If you are experiencing symptoms or are concerned about your risk for endometriosis, you should schedule an appointment with your doctor.

"Painful periods are not normal," Aliabadi emphasized. "If you have painful periods, heavy periods or experience pain during sex, you should see your gynecologist to get tested for endometriosis. Your doctor will help manage your pain and will help guide you on how to alleviate the pain or get pregnant if growing a family is something you look forward to in the future."

The timing for evaluation is important, George added. Most adolescents and women experience cramping, which is usually responsive to over-the-counter pain medications.

"For those who do not see an improvement of pain with NSAIDs/OCPs within three to six months or those with dyspareunia [painful sex], evaluation is warranted, especially for those women with first-degree relatives with documented endometriosis," she said. NSAIDs are nonsteroidal anti-inflammatory drugs, and OCPs are oral contraceptive pills.

There are some comorbidities to be aware of, too.

"If you have been diagnosed with PCOS [polycystic ovary syndrome], there's a good chance that you may also have endometriosis," Aliabadi said. "Please make an appointment to see an experienced gynecologist. Women don't need to live with this type of pain. There is help out there."

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