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What Is Endometriosis?

Endometriosis is a chronic and painful condition. It happens when tissue that normally lines the uterus grows in other places, like the ovaries or fallopian tubes.

Each month, the uterine lining builds up and then sheds through the cervix and then vagina when you get your period. Tissue that's outside your uterus builds up and breaks down, too. But because it has no way to leave your body, it swells up and in some women it causes pain and scars.

The pain and other symptoms can get in the way of your job, social life, and relationships. Endometriosis can also make it harder for you to get pregnant. But there are good treatments to relieve symptoms and help you get your life back.

What Parts of Your Body Can Endometriosis Affect?

What Are Symptoms of Endometriosis?

Endometriosis affects every woman differently. How you feel has nothing to do with how bad your disease is. Some women have a lot of endometrial tissue but very few symptoms. Others have very little tissue but strong symptoms.

Pain is the main symptom of endometriosis. Often you'll feel that pain before and during your period, but it's more intense than normal period pain. Heavy periods, low back pain, and painful sex are also common.

Other symptoms of endometriosis are:

  • Pain when you pee or poop
  • Nausea, constipation, or diarrhea
  • Bloating
  • Blood in your pee
  • Trouble getting pregnant, called infertility

What Endometriosis Feels Like

Endometriosis is about more than just painful periods. The pain can get in the way of your daily routine. Other symptoms like painful sex and infertility can strain your romantic relationships.

Having a chronic pain condition like endometriosis can make you feel a lot of emotions, including:

Frustration is also common. It can take up to 10 years just to get the right diagnosis. That means you might have lived with symptoms for a long time before getting any treatment.

About 190 million women around the world live with endometriosis, and a lot of support is available to help.

How Can These Symptoms Affect Your Daily Life?

Endometriosis can affect your life in many ways.

Physical symptoms like bloating can harm your self-esteem and self-confidence. Pain and fatigue might keep you at home while your friends go out. Diarrhea and heavy periods bring worries about having to find a bathroom when you're away from home.

About half of women with endometriosis say they have less of a social life because of their symptoms. And this condition often starts during your most socially active years -- in your teens or 20s.

It's hard to go to work when you don't feel well. Women with symptoms of their endometriosis miss more days of work than those who don't have this condition. Too much time off from work might keep you from moving forward in your career.

Pain during sex is another common endometriosis symptom. The pain, plus fatigue, bleeding, and a loss of self-esteem, can put a strain on your relationship. More than half of women surveyed said they worried they'd lose their partner because of their endometriosis.

Infertility also puts strain on relationships. Although many women with endometriosis do get pregnant and have a healthy pregnancy, it sometimes takes longer to conceive. Some couples can feel so much anxiety about getting pregnant that they start trying earlier than they'd planned to give themselves enough time.

What Are the Best Ways to Take Control of Endometriosis?

Though it might take a while to get diagnosed, once you know you have endometriosis you can take control of it. Your doctor has three types of treatments to manage your symptoms and stop them from controlling your life: pain medication, hormone therapy, and surgery.

An over-the-counter pain reliever might be all you need to manage mild endometriosis symptoms. Doctors often recommend nonsteroidal anti-inflammatory drugs (NSAIDs) like ibuprofen (Advil, Motrin) or naproxen sodium (Aleve) for period pain.

Your ovaries produce hormones that control your menstrual cycle. These hormones make your endometrial tissue thicken and break down each month. Hormone therapy lowers or stops hormone production to slow tissue growth, relieve pain, and make your periods lighter.

Hormone therapy comes in a few types:

  • Birth control pills that combine estrogen and progesterone
  • Progesterone-only pills
  • Gonadotropin-releasing hormone (GnRH) medicines that stop ovulation
  • Danazol, a version of the male hormone testosterone

These medications can cause side effects. Let your doctor know if you notice weight gain, depression, bleeding between periods, or menopause-like side effects such as hot flashes, bone loss, and vaginal dryness. Your period will stop while you're taking these some of these medications, but it should start again once you stop them.

You might need surgery to remove the tissue if your pain is severe and medication hasn't given you enough relief. The most common way to remove endometriosis is with laparoscopy.

During this procedure, the surgeon makes a few small cuts in your belly and uses a scope and tiny instruments to remove the extra tissue. Surgery can help relieve pain and improve fertility, but eventually the tissue can grow back.

Laparotomy creates a larger opening. The surgeon can remove your uterus (called hysterectomy) and your ovaries (oophorectomy), if needed. Taking out your uterus and ovaries is a last resort if no other treatment has helped you. It is a more permanent treatment. You'll go into menopause afterward and you won't be able to get pregnant.

Self-Management Tips for Endometriosis

Can I Feel Better?

Treating endometriosis can be a challenging and sometimes frustrating process. It can take years just to get the right diagnosis. The number of treatments has increased, but hormone therapy and surgery are still the main ones, and both can cause side effects.

Treatments are slowly getting better. Fewer people with endometriosis need to be treated in a hospital than in the past. And women who have surgery today usually don't need an invasive procedure.

You don't have to settle for a life with chronic pain, heavy periods, and other endometriosis symptoms. You can find a doctor you trust and feel comfortable with to help make sure you get treatment that's most likely to relieve your symptoms.

Be persistent. If the first treatment you try doesn't work, ask your doctor about switching to something else. You might want to ask for a second opinion, or join a clinical trial of a new treatment that's not yet approved.