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What does endometriosis mean for you?

by Thomas Fromuth, MD, from UPMC Pinnacle Lititz and Ob-Gyn of Lancaster

If you are like most women, you are probably thinking “endo what?” About 10 percent of reproductive-age women suffer with this potentially debilitating disease. In fact, many famous women have or had endometriosis, including Lena Dunham, Marilyn Monroe and Susan Sarandon. Worldwide there are 176 million women suffering and yet… very few people know what it is.

What is endometriosis?

The best way to think of endometriosis is as a disease that causes killer cramps in women. Not just your normal menstrual cramps. These cramps are so bad you have to lay on the bathroom floor or on your sofa immobilized. Motrin, Aleve, Midol do not touch the pain. Worst, no one believes your pain could be that bad. They think you are overreacting or faking it, saying “Suck it up! It’s just part of being a woman.” If that is not all bad enough, you can also have heavy and prolonged menses, pain between periods, painful intercourse, and infertility. You feel isolated and alone because nobody understands and nobody believes you…sometimes not even your doctor. 

Is this you? If so, you don’t have to suffer. There is hope.

The Facts of Endometriosis

Before I get into the diagnosis and treatment of endometriosis, here are some basic facts. They’ll give you a better understanding of the disease.

  • Endometriosis is a disease where cells like those that line the uterus grow on tissues and organs outside the uterus, usually in the abdomen but elsewhere too.
  • It affects 1 in 10 women worldwide.
  • It affects women during childbearing age (from first period until menopause).
  • There is no one clear cause of endometriosis, but genetics is involved. If your mother had endometriosis, you are six times more likely to have the disease.
  • Symptoms typically begin during puberty but can start later.
  • There is an average of a 10-year delay in diagnosing endometriosis.
  • Thirty to forty percent of women with endometriosis experience infertility.
  • Endometriosis affects all races and economic classes.
  • There is no cure for endometriosis. But there is help, sometimes with medications and surgery.
  • Hysterectomy with removal of the ovaries is NOT the cure for endometriosis.

How does endometriosis affect you?

Endometriosis negatively affects a woman’s life in substantial ways. Because of this pain, you experience 38 percent more work productivity loss then those women without it. Non-work-related activities, such as housework, exercising, studying, shopping and childcare, can also be significantly impaired by its painful symptoms. Painful intercourse can cause you to not only not enjoy sex, but also to avoid sex. This often leads to difficult relationship issues.

Adolescent girls may not get help because people so rarely believed them when they complain of pain. Women who have had children often have their endometriosis misdiagnosed because they were not infertile.

How is endometriosis diagnosed?

Endometriosis is diagnosed by your doctor in a few different ways. Tests to check for physical symptoms of it include:

  • Listening – a physician with a good understanding of endometriosis will listen to your symptoms. He or she can tell a lot about whether you may be experiencing endometriosis or another condition.
  • Pelvic exam – your doctor manually feels areas in your pelvis for abnormalities like cysts or scars. This test will not directly determine whether you have endometriosis, but it can identify cysts associated with the disease.
  • Ultrasound – an abdominal or transvaginal ultrasound may be ordered. This test takes images of your reproductive organs. Although this test will not directly determine whether you have endometriosis, it can identify cysts associated with the disease.
  • Laparoscopy – although medical management is typically recommended first, laparoscopy is another diagnostic tool. While under general anesthesia, your doctor will make a small incision by your navel. They will then insert the laparoscope to look for endometrial tissue outside of your uterus. They may take a biopsy to test the tissue. Laparoscopy can provide information about the location, extent and size of your endometrial tissue.

How is endometriosis treated?

Treatment of endometriosis can vary from medications to surgery. The approach you and your doctor choose will depend on the severity of your symptoms. These treatment options include:

  • Pain medications
  • Hormone therapy
  • Conservative surgery to remove the excess endometrial tissue
  • Hysterectomy (in extreme cases) along with removal of any endometriosis if present

Unfortunately, there is no cure for endometriosis. But treatment options are available to help manage your symptoms.

If you or someone you know have these symptoms, please talk to your ob-gyn or your primary care provider. See a complete list of our ob-gyn providers online

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