If you or a loved one is living with endometriosis, you may have spent countless hours poring over websites and research papers trying to decipher the most essential information about its causes, symptoms, and progression. But even the most detail-oriented researchers may not know every fact about endometriosis, because the disease has so many variables from one person to the next.

By learning these five lesser-known facts about endometriosis, you can deepen your understanding of the condition. Ultimately, more knowledge can empower you to self-advocate as you navigate your way toward health and healing.

Fact 1: Not Everyone With Endometriosis Experiences Symptoms

In most cases, people with endometriosis solicit and receive a diagnosis based on the symptoms they experience throughout and between their menstrual cycles, such as excessive bleeding, dysmenorrhea (cramps), and painful urination and bowel movements. However, one study found that 20 percent to 25 percent of people with the condition are asymptomatic. Another study found the disease is likely to be more prevalent among fertile women than previously thought. The discovery of endometrial lesions in asymptomatic people tends to occur during abdominal surgery performed for reasons unrelated to endometriosis.

The bottom line is that although endometriosis may be more common throughout the population, the range and degree in which it presents itself varies from individual to individual. It can present as one of the four stages of endometriosis or an asymptomatic phenomenon bearing little to no effect on the body. Regardless of the results, work with your doctor to create the best course of action for treatment.

Fact 2: People With Endometriosis Often Develop Autoimmune Conditions

Researchers have found that people with endometriosis are at greater risk for developing an autoimmune disease. “I feel like I am going crazy,” said one MyEndometriosisTeam member. “Again and again, I have asked my doctors to check if I have an autoimmune disease, but no one takes me seriously.”

Autoimmune conditions arise when the immune system attacks one or multiple areas within the body, such as the muscular, endocrine, nervous, cardiovascular, and integumentary systems. A study of 3,680 people surgically diagnosed with endometriosis concluded that participants were more likely than those in the general population to develop an autoimmune disease and were more than twice as likely to develop fibromyalgia. Furthermore, 20 percent of study participants were managing more than one disease — hypothyroidism and chronic fatigue syndrome ranked high among those conditions.

Researchers are continuing to study this area to determine more about the link between endometriosis and autoimmune diseases.

Fact 3: Endometriosis Is Underdiagnosed in Adolescents

When sharing their experiences with doctors, many adults describe severe symptoms of endometriosis beginning at the onset of menstruation. Yet some health care professionals subscribe to the notion that it is impossible for teens to develop endometriosis. This can lead to delays in diagnosis and early interventions.

Studies conducted within the past decade are shifting attitudes by demonstrating that early diagnosis and targeted treatments can improve outcomes, fertility prospects, and quality of life for teens diagnosed with the condition.

Fact 4: Genetics Most Likely Play a Factor

Although there isn’t complete consensus on the topic, many scientists and researchers agree that genetics may influence the cause and severity of a person’s case of endometriosis. Researchers are utilizing DNA-mapping technology (the process of deconstructing the building blocks in a DNA strand) to isolate the gene or genes responsible for endometriosis.

As the studies relate to the family tree, anyone who is a parent, full sibling, or child of a person diagnosed with endometriosis is at greater risk of developing the disease. Furthermore, inheriting the disease increases the likelihood of experiencing early and more acute symptoms, as well as infertility.

Fact 5: Endometriosis Can Cause Rectal Bleeding

It’s rare, but rectal bleeding can happen in people with endometriosis. This generally occurs in the presence of deep intestinal invasive endometriosis and affects a small percentage of all people with endometriosis. Rectovaginal endometriosis can be isolated or can appear during any of the four stages of endometriosis, forming deep implants that infiltrate the uterus and surrounding organs — specifically but not limited to the ovaries, fallopian tubes, bladder, and intestines.

Other symptoms include:

• Adhesions (scar tissue) that bind abdominal organs
• Endometriomas (cysts filled with endometrial blood)
• Chronic discomfort
• Irritable bowel syndrome
• Bloody bowel movements

In one study, a woman had undergone a complete hysterectomy, yet she continued to experience moderate to heavy bleeding monthly from her rectum due to rectosigmoid endometriosis.

Pain management, hormones, and laparoscopic surgery (which relieves 70 percent of symptoms) make it possible for those managing stage 4 endometriosis to find relief.

Talk With Others Who Understand

MyEndometriosisTeam is the social network for people with endometriosis and their loved ones. On MyEndometriosisTeam, more than 121,000 members come together to ask questions, give advice, and share their stories with others who understand life with endometriosis.

What facts would you add to this list? Share your experience in the comments below, or start a conversation by posting on your Activities page.