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Why Does Endometriosis Often Go Undiagnosed in Young Women?

Endometriosis is a common condition that affects 10-20% of women of childbearing age and 70% of women who experience ongoing pelvic pain.1

Many studies have shown that endometriosis often begins around the time of the first menstrual period. However, for younger women especially, it can often take many months to years to diagnose the disease correctly. In fact, research conducted by the Endometriosis Association found that it can sometimes take up to 10 years for a young woman to get a proper diagnosis.2 For most women, the pain does not go away with normal over-the-counter pain medications.3

Symptoms for younger women can vary

For younger women, the symptoms of endometriosis can sometimes be different from those of older women; This is part of the challenge in getting properly diagnosed and treated.

  • A younger woman’s pelvic pain can happen at any point in her cycle, whether or not she is having a period.
  • Pain focused around the ovaries generally does not begin until about age 25.
  • Younger women experience more confounding intestinal symptoms that can lead medical providers to test for the wrong cause.

OB/GYN’s have the best record at diagnosis

Because of the non-specific and intestinal symptoms experienced by younger women, their first trip to the doctor might result in tests for bowel or other gastrointestinal problems.

In one study, woman had to visit an average of three doctors before being properly diagnosed. These included gastroenterologists, urologists, and other specialists, including orthopedic surgeons, infectious disease physicians, pain management specialists, physical therapists, and psychiatrists.4

Research shows that gynecologists have the best record for diagnosing endometriosis correctly and quickly. One paper reports that young women who first saw a gynecologist for their symptoms had a shorter time to diagnosis, saw fewer doctors, and had a better experience during diagnosis.1

Common myths about age

Endometriosis used to be described as a disease that affects women in their 30s and 40s, so doctors often don’t think to check for it among younger women. In fact, more recent research has shown that endometriosis can affect people starting with the first menstrual period, and well into old age. Patient advocacy organizations have made a push to correct these common myths, so that doctors are better informed.5

Many women aren’t taken seriously

Despite the difficulties in diagnosis, one of the additional challenges is that often, women are not taken seriously when they describe the symptoms of endometriosis. This is especially true for younger women, who can often be told that “period pain is normal” or they might be accused of trying to avoid school or other activities.1,2

Diagnosis must be surgical

The only way definitively to diagnose endometriosis is through laparoscopic surgery, where a doctor inserts a mini camera through a small incision in the lower abdomen to look inside the body. This could feel like an invasive procedure, so young women, their family members, and their doctors, might be reluctant to undergo the surgery. Additionally, the distinctive endometrial tissue that doctors find during surgery often looks different for younger women than for older women. This, too, can make proper diagnosis more difficult, even for an experienced physician.7

Diagnosis is important

Even though proper diagnosis can be challenging, it’s important to get diagnosed early so you can best avoid lasting problems with pregnancy or worsening symptoms. Endometriosis can affect your ability to participate in school or activities, and prompt diagnosis and treatment is the best way to stay active and limit or avoid future problems.7

  1. Rebecca Greene, Pamela Stratton, and Sean Cleary, et. al. Diagnostic experience among 4,334 women reporting surgically diagnosed endometriosis. January 2009. Volume 91 (Issue 1) pages 32-39. Available at: https://www.fertstert.org/article/S0015-0282(07)04085-X/fulltext. Accessed February 6, 2019.
  2. Abby Ellin. Endometriosis Is Often Ignored in Teenage Girls. March 30, 2015. The New York Times. Available at: https://well.blogs.nytimes.com/2015/03/30/endometriosis-is-often-ignored-in-teenage-girls/ Accessed February 6, 2019.
  3. Endometriosis. Mayo Clinic. Updated July 24, 2018. Available at: https://www.mayoclinic.org/diseases-conditions/endometriosis/symptoms-causes/syc-20354656 Accessed February 6, 2019.
  4. Erica C. Dun, Kimberly A. Kho, Vadim V. Morozov, et al. Endometriosis in Adolescents. Endometriosis in adolescents. JSLS. 2015;19(2):e2015.00019. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4432718/ Accessed February 6, 2019.
  5. Endo Myths (1980) vs Endo Facts (2018). The Endometriosis Association. Available at: https://endometriosisassn.org Accessed February 6, 2019.
  6. Amy Norton. Symptoms in teen years may foretell severe endometriosis. Reuters. November 19, 2010. Available at: https://www.reuters.com/article/us-symptoms-teen/symptoms-in-teen-years-may-foretell-severe-endometriosis-idUSTRE6AI5EV20101119 Accessed February 6, 2019.
  7. Dessole M, Melis GB, Angioni S. Endometriosis in adolescence. Obstet Gynecol Int. 2012;2012:869191. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3474254/ Accessed February 6, 2019.

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