It’s Time We Talk About Endometriosis

Endometriosis—when the uterine lining grows outside of the uterus, resulting in severe pain, swelling and bleeding—is thought to affect more than 11 percent of all American women between the ages of 15 and 44. This condition impacts 6.5 million U.S. women, and 176 million women worldwide. Yet, it is still not easily recognized. It takes about 10 years from when women experience their first symptoms to receive an endometriosis diagnosis—half that time to recognize and bring up symptoms to a doctor and the other half for the doctor to diagnose it. For Endometriosis Awareness Month this March, we as obstetrician-gynecologists must do our part to raise awareness about the condition with our patients, strive to improve our understanding of the disease, and ensure more timely and accurate diagnoses.

Improving awareness and timely diagnosis of endometriosis helps women avoid unnecessary pain, and decrease infertility rates. Around 40 percent of all women with infertility have endometriosis and, of women diagnosed with endometriosis, about 40 percent experience fertility challenges. Many women struggling with infertility remain undiagnosed; others won’t be diagnosed with endometriosis until they start to experience problems conceiving. It falls to ob-gyns to reverse this trend, particularly as 63 percent of general practitioners feel uncomfortable diagnosing and treating patients with endometriosis, and as many as half are unfamiliar with the three main symptoms of the disease.

Early endometriosis diagnosis and treatment lead to better outcomes. Careful listening and discussion are integral to early detection, as many common symptoms are not so obvious, such as chronic lower back pain and intestinal problems like diarrhea, constipation, bloating and nausea. We can also look for indicators that a woman is at greater risk of having endometriosis, including if she’s in her 30s and 40s; has a close relative who has been diagnosed with endometriosis (which increases risk by five to seven times); and has a higher body mass index (which is thought to promote the development of endometriosis because fat increases estrogen levels).

Raising awareness about endometriosis and increasing its timely diagnosis improves women’s lives. While symptoms may range in terms of severity, nearly all of them take a physical toll on a woman’s day-to-day life—from increasing tiredness to limiting her physical capabilities. It’s time to talk with our patients more regularly about endometriosis, and ensure more women are getting the care and support they need.

A Call to Action for Increased Funding for Endometriosis

An estimated 176 million women and girls throughout the world are affected by endometriosis, according to the World Endometriosis Society. I’m pleased to announce that ACOG, ASRM, and other organizations are co-sponsoring the worldwide Million Woman March for Endometriosis to raise awareness and advocate for increased funding for this common and often painful gynecologic condition. We believe that an internationally-coordinated campaign is absolutely necessary to effect change. So on March 13, we’ll be marching on the National Mall in Washington, DC, while similar events take place throughout the world.

Endometriosis affects 6–10% of all reproductive-age women. It’s a leading cause of chronic pelvic pain and a common cause of infertility. Unfortunately, we still don’t know what causes it. And the treatments that we have, while helpful, are not curative. According to the Endometriosis Foundation of America and the World Endometriosis Research Foundation, the health care costs of endometriosis are estimated to be $70–95 billion each year in the US alone. Although this is comparable to other chronic diseases, two-thirds of these costs are due to loss of productivity at work.

Our campaign goals include:

  • Empowering women and teens by encouraging them to unite with their supporters to take a stand against endometriosis.
  • Raising awareness about endometriosis and its effects on women and girls.
  • Educating and training the medical community to promote early detection and improved treatment.
  • Finding a cure for endometriosis and developing non-invasive diagnostic tests.
  • Working with Congress to allocate funding for endometriosis.

We won’t be marching alone in March. Awareness campaigns also will be occurring in dozens of capitals around the world—Amsterdam, Belfast, Berlin, Brasilia, Buenos Aires, Copenhagen, Dublin, Helsinki, Kingston, Lisbon, London, Madrid, Oslo, Reykjavik, Rome, and Stockholm, to name just a few.

Throughout my presidential term, I have advocated for well-woman health care and prevention. Wouldn’t it be wonderful to one day have endometriosis on the list of “preventable” conditions? That will only happen when our research discovers the cause.

Please plan to join us in Washington, DC, on March 13. For more information about supporting the Million Woman March for Endometriosis, go to www.millionwomanmarch2014.org.

Resource: Endometriosis Fact Sheet (PDF)

What Is Endometriosis?

March is Endometriosis Awareness Month. Do you know what endometriosis is?

If your answer is no, you’re not alone. Although it is a common disease affecting up to 10% of reproductive-age women and is the culprit in many cases of chronic pelvic pain, painful periods, and infertility, most people are largely unfamiliar with what it is and how this condition impacts women.

Endometriosis occurs when the cells that line the uterus migrate to other parts of the pelvic region, attaching where they don’t belong, which leads to a recurring cycle of bleeding and healing and the eventual development of scar tissue. The scar tissue can cause mild to severe pelvic pain before and during menstruation; pain during sex, urination, or bowel movements; and menstrual bleeding more than once a month. In some women, endometriosis causes no symptoms at all and they may be first diagnosed when they have trouble getting pregnant. It’s most often seen in women in their 30s and 40s, but it can occur in women of any age. Women who have never had children and those who have a mother, sister, or daughter with endometriosis may be at increased risk.

Endometriosis can only be diagnosed through surgery, so if you have symptoms or risk factors, talk to your doctor. Laparascopy—a surgical procedure that uses a lighted scope to view the pelvic organs—is often used to detect endometriosis. If scar tissue is found, it can often be removed during the procedure. Your doctor may also recommend medication, such as ibuprofen or naproxen, for pain relief or prescribe birth control pills to control the menstrual cycle and shrink areas of endometriosis. In severe cases, there are other medications that may be potentially beneficial, or hysterectomy may be an option.

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