Adolescents and Teens with Endometriosis: Hidden in Plain Sight
By Iris Kerin Orbuch, MD
In my career as a gynecologic surgeon, I see every day what happens when endometriosis goes undiagnosed. With every new, heartbreaking journey of pain and misdiagnosis, my sense of purpose grows stronger. Endometriosis shouldn’t be a “journey” at all. Patients should receive a diagnosis when signs and symptoms appear and have effective treatment before it decays their quality of life or diminishes their fertility. Period.
I have become passionate about early diagnosis of endometriosis in adolescents and teens, but I’ve found that most doctors don’t look for endometriosis or don’t recognize it in adolescents and teens. We are working to change that.
Endo at Ages 8 to 18
Endometriosis isn’t a 20-something or 30-something or 40-something condition. It starts early. One study found that about 9% of female fetuses tested positive for endometriosis cells.1 In early adolescence, before periods begin, many girls with endometriosis have gastrointestinal symptoms and pelvic pain.2 And menstruating adolescents and teens frequently have a range of symptoms, including severe pelvic pain that makes them miss school.2
Although a diagnosis of endometriosis is confirmed laparoscopically, doctors can be quite confident about diagnosing the condition in adolescents and teens by asking research-based questions about history and symptoms.2
Before and after periods start:
- Is there a family history of endometriosis or painful periods?
- Where is the pain (pelvis, lower back, other locations)?
- Do you have any gastrointestinal symptoms (bloating, constipation, nausea, diarrhea, painful bowel movements)?
- Do you have urological symptoms (urgent/frequent urination, bladder pain, burning/painful urination)?
- Do you ever miss school because of your pain?
After periods start:
- Do you have very painful cramps with your period?
- Does pelvic pain occur when you have your period and/or at other times, too?
- Do you ever feel nauseous when you’re in pain?
- Is menstrual bleeding very heavy?
If the answers to these questions point to endometriosis, doctors can move on to treatment. The cornerstone of treatment for endometriosis is excision of endometriosis implants, a laparoscopic procedure and the only treatment that stops progression of endometriosis. But before any of that can happen, doctors who see girls every day need to learn about endometriosis and start asking these questions
Teaching the Doctors
Pediatricians and family practice physicians are best positioned to diagnose adolescents and teens with endometriosis. For example, by asking the right questions, they can recognize when a 9-year-old’s gastrointestinal problems may indicate endometriosis. Yet when I work to educate these physicians, even those who have just finished their training say they were not taught to recognize endometriosis. It’s a confounding gap in medical education.
Even some gynecologists rely on an outdated understanding of endometriosis. As head of the endometriosis group at AAGL, I am leading an effort to create endometriosis continuing education and practice guidelines that will help standardize knowledge, diagnosis, and treatment among gynecologists. In addition, through my work with Shannon Cohn, Director of Endo What?, I am helping get a DVD of the organization’s endometriosis documentary into every school nurse kit in the country to help those front-line caregivers recognize the condition.
The community of endometriosis experts will continue to work hard to change the status quo, and everyone with endometriosis can help by spreading the word and raising expectations. There is no reason for an adolescent or teen to start an endometriosis “journey” – she deserves early diagnosis and treatment.
- Signorile PG, Baldi F, Bussani R, et al. Embryologic origin of endometriosis: analysis of 101 human female fetuses. J Cell Physiol 2007;227:1653-6.
- Brosens I, Gordts S, Benagiano G. Endometriosis in adolescents is a hidden, progressive and severe disease that deserves attention, not just compassion. Hum Reprod. 2013 Aug; 28(8): 2026–2031.
By Iris Kerin Orbuch, MD
Director, Advanced Gynecologic Laparoscopy Center
Los Angeles and New York City
Vice Chair, AAGL Endometriosis Special Interest Group
* The participate is unpaid, non-solicited volunteers of information.
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