What Is Endometriosis?
Endometriosis happens when the endometrium, the tissue that usually lines the inside of a woman’s uterus, grows outside it.
This tissue acts like regular uterine tissue does during your period: It will break apart and bleed at the end of the cycle. But this blood has nowhere to go. Surrounding areas may become inflamed or swollen. You might have scar tissue and lesions.
Endometriosis is most common on your ovaries
Types of Endometriosis
There are three main types of endometriosis, based on where it is:
- Superficial peritoneal lesion. This is the most common kind. You have lesions on your peritoneum, a thin film that lines your pelvic cavity.
- Endometrioma (ovarian lesion). These dark, fluid-filled cysts, also called chocolate cysts, form deep in your ovaries. They don’t respond well to treatment and can damage healthy tissue.
- Deeply infiltrating endometriosis. This type grows under your peritoneum and can involve organs near your uterus, such as your bowels or bladder. About 1% to 5% of women with endometriosis have it.
You might not notice any symptoms. When you have them, they can include:
- Back pain during your period
- Severe menstrual cramps
- Pain when pooping or peeing, especially during your period
- Unusual or heavy bleeding during periods
- Blood in your stool or urine
- Diarrhea or constipation
- Painful sex
- Fatigue that won’t go away
- Trouble getting pregnant
Doctors don’t know exactly what causes endometriosis. Some experts think menstrual blood that contains endometrial cells may pass back through your fallopian tubes and into your pelvic cavity, where the cells stick to your organs. This is called retrograde menstruation.
Your genes could also play a role. If your mom or sister has endometriosis, you’re more likely to get it. Research shows that it tends to get worse from one generation to the next.
Some women with endometriosis also have immune system disorders. But doctors aren’t sure whether there’s a link.
Severe endometriosis pain can affect your quality of life. Some women struggle with anxiety or depression. Medical treatments and mental health care can help.
Endometriosis may raise your risk of ovarian cancer or another cancer called endometriosis-associated adenocarcinoma.
Endometriosis and Fertility
Endometriosis is the leading cause of infertility. It affects about 5 million women in the United States, many in their 30s and 40s. Nearly 2 of every 5 women who can’t get pregnant have it.
If endometriosis interferes with your reproductive organs, your ability to get pregnant can become an issue:
- When endometrial tissue wraps around your ovaries, it can block your eggs from releasing.
- The tissue can block sperm from making its way up your fallopian tubes.
- It can stop a fertilized egg from sliding down your tubes to your uterus.
A surgeon can fix those problems, but endometriosis can make it hard for you to conceive in other ways:
- It can change your body’s hormonal chemistry.
- It can cause your body’s immune system to attack the embryo.
- It can affect the layer of tissue lining your uterus where the egg implants itself.
Your doctor can surgically remove the endometrial tissue. This clears the way for the sperm to fertilize the egg.
If surgery isn’t an option, you might consider intrauterine insemination (IUI), which involves putting your partner’s sperm directly into your uterus.
Your doctor may suggest pairing IUI with “controlled ovarian hyperstimulation,” which means using medicine to help your ovaries put out more eggs. Women who use this technique are more likely to conceive than those who don’t get help.
In vitro fertilization (IVF) is another option. It can raise your chances of conceiving, but the statistics on IVF pregnancies vary.
Your doctor might suspect endometriosis based on your symptoms. To confirm it, they can do tests including:
- Pelvic exam. Your doctor might be able to feel cysts or scars behind your uterus.
- Imaging tests. An ultrasound, a CT scan, or an MRI can make detailed pictures of your organs.
- Laparoscopy. Your doctor makes a small cut in your belly and inserts a thin tube with a camera on the end (called a laparoscope). They can see where and how big lesions are. This is usually the only way to be totally certain that you have endometriosis.
- Biopsy.Your doctor takes a sample of tissue, often during a laparoscopy, and a specialist looks at it under a microscope to confirm the diagnosis.
Doctors use the American Society of Reproductive Medicine’s four stages of endometriosis:
- Stage I (minimal). You have a few small lesions but no scar tissue.
- Stage II (mild). There are more lesions but no scar tissue. Less than 2 inches of your abdomen are involved.
- Stage II (moderate). The lesions may be deep. You may have endometriomas and scar tissue around your ovaries or fallopian tubes.
- Stage IV (severe). There are many lesions and maybe large cysts in your ovaries. You may have scar tissue around your ovaries and fallopian tubes or between your uterus and the lower part of your intestines.
The stages don’t take pain or symptoms into account. For example, stage I endometriosis can cause severe pain, but a woman who has stage IV could have no symptoms at all.
Questions For Your Doctor
If you’ve been diagnosed with endometriosis, you might want to ask things like:
- Why is endometriosis painful?
- What can I do to control my endometriosis symptoms?
- Do I need medication? How does it work?
- What are the side effects of medication for endometriosis?
- Will endometriosis affect my sex life?
- How do birth control pills affect endometriosis?
- If I’m having trouble getting pregnant, could fertility treatments help? What about surgery?
- Can surgery stop my symptoms?
- What might happen if I do nothing? Can endometriosis go away without drugs or surgery?
- Will it last my whole life?
- Should I consider joining a clinical trial?
- How often do I need to see a doctor?