Understanding Endometriosis: symptoms, causes and treatment

Endometriosis is a condition that affects roughly one in 10 people who can become pregnant. It is a chronic disease with symptoms that may become severe. Endometriosis cannot be cured, but early diagnosis and treatment may help control symptoms.1

What is endometriosis?

Endometriosis happens when uterine-like tissue grows in places it shouldn’t — most often on the ovaries, fallopian tubes or other organs in the pelvic area.1

This tissue acts just like the uterine lining: it thickens, breaks down and bleeds with each menstrual cycle. But unlike menstrual blood, it has no way to leave the body. Over time, this can cause inflammation, pain and sometimes scar tissue that sticks organs together.1

Common symptoms and warning signs of endometriosis

Endometriosis can look different for everyone. Some people have bad symptoms, while others don't have any problems. The most common sign is pelvic pain that tends to get worse during periods. Because the symptoms often overlap with other health conditions, it may take years to get a diagnosis.2,3 Paying attention to your body and noting patterns in pain can help you start a conversation with your doctor.

Common symptoms include:

  • Pelvic pain, especially during periods
  • Pain during or after sex
  • Painful bowel movements or urination, particularly during menstruation
  • Heavy or irregular menstrual bleeding
  • Trouble getting pregnant
  • Fatigue, diarrhea, constipation or nausea, especially during periods2,3

What are the causes and risk factors for endometriosis?

Doctors don’t know for sure what causes endometriosis. But they have some ideas. One theory is that menstrual blood sometimes flows backward through the fallopian tubes into the pelvic area, where the cells start to grow. Another idea is that hormones and the immune system make it easier for this tissue to grow outside the uterus.1, 2

Some things may raise your risk, like having a family member with endometriosis. Knowing these risks may help you and your provider find it earlier.

Potential causes and risks include:

  • Retrograde menstruation: When menstrual blood flows back through the fallopian tubes into the pelvic cavity2
  • Hormones: Estrogen may help the condition to grow and spread2
  • Immune system issues: A problem with immune response may prevent the body from recognizing and destroying tissue growing outside the uterus1
  • Genetics: Having a close relative with endometriosis may raise your risk3

How is endometriosis diagnosed?

Because endometriosis shares symptoms with conditions like ovarian cysts or irritable bowel syndrome (IBS), it can sometimes be tricky to diagnose. Many people live with symptoms for years before getting answers. If you think you might have endometriosis, the first step is talking with your primary care doctor. They’ll review your symptoms and medical history and may order tests to get a clearer picture.2, 3

Tests and procedures that may help include:

  • A pelvic exam to feel for cysts or scars
  • Ultrasound or MRI to create images of the reproductive organs
  • Laparoscopy, a minor surgery using a small camera — and the only way to confirm endometriosis2, 3

What to know about endometriosis and fertility

Endometriosis may make it harder to get pregnant, but it doesn’t mean pregnancy is impossible. The tissue growth can cause inflammation and scarring, which may block the fallopian tubes or affect the ovaries.1,2 Even with these challenges, many people with endometriosis do become pregnant — sometimes naturally and sometimes with the help of fertility treatments. If you’re planning to start a family, it’s important to talk with your care team.

What are treatment options and ways to manage endometriosis?

There isn’t a one-size-fits-all approach to treating endometriosis. Treatment depends on how severe your symptoms are and whether you want to become pregnant in the future. Some people find relief with medications, while others may need surgery.1, 2, 3

Treatment options include:

  • Medications: Pain relievers, hormone therapy (like birth control pills or injections) may help ease pain and slow tissue growth2,3
  • Surgery: Laparoscopic surgery may remove or destroy endometrial tissue and scar tissue. In severe cases, hysterectomy may be considered.2
  • Fertility treatments: If getting pregnant is difficult, procedures like in vitro fertilization (IVF) may help1

Tips for living with endometriosis

Living with a chronic condition like endometriosis can be tough, but small steps may make symptoms easier to manage day-to-day. Building a support system and finding strategies that work for your body may help you feel more in control.3 Don’t be afraid to ask your care team about resources, whether it’s a support group, pain management tools or mental health services.

Ways to cope include:

  • Track your symptoms in a journal or app
  • Use heat (like heating pads) to ease cramps
  • Try relaxation techniques such as yoga or meditation
  • Join a support group for people living with endometriosis
  • Talk openly with your primary care doctor about treatment options and how symptoms affect your daily life3

Who should I see if I’m concerned about endometriosis?

If you notice ongoing pelvic pain, painful periods or fertility concerns, make an appointment with your doctor. They may refer you to a gynecologist — especially one with experience in endometriosis — for further evaluation. Having a specialist on your care team can help you get the right treatment.