Feature

The push is on to recognize endometriosis in adolescents


 

Meg Hayden, RN, a school nurse in Oxford, Miss., used to be a labor and delivery nurse and considers herself more attuned to women’s health issues than other school nurses are. Still, a new educational initiative on endometriosis that stresses that menstrual pain is not normal – and that teenagers are not too young to have endometriosis – has helped her “connect the dots.”

“It’s a good reminder for me to look at patterns” and advise those girls who have repeated episodes of pelvic pain and other symptoms to “keep a diary” and to seek care, Ms. Hayden said.

School nurse Meg Hayden, RN, feels empowered by a new educational initiative to advise teens with endometriosis symptoms to seek care. Courtesy Shannon Cohn

School nurse Meg Hayden, RN, feels empowered by a new educational initiative to advise teens with endometriosis symptoms to seek care.

Endometriosis – a disease in which tissue similar to the endometrium grows outside the uterus – has been thrust into the spotlight in the United States and internationally by increasingly visible and vocal activists and patient advocacy groups who aim not only to improve patient awareness through events like the Worldwide Endometriosis March and programs such as the School Nurse Initiative but who also want to change the narrative in medicine.

They are demanding that serious diagnostic delays be rectified – that disease symptoms be better recognized by gynecologists, pediatricians, and other primary care physicians – and then, that the disease be better managed.

Some of the advocacy groups have petitioned the American College of Obstetricians and Gynecologists to involve patients and endometriosis experts in creating new standards of care. And at press time, activist Shannon Cohn, who developed the School Nurse initiative after producing a documentary film titled Endo What?, was working with Sen. Orrin Hatch (R-Utah) and Sen. Elizabeth Warren (D-Mass.) on finalizing plans for a national public service announcement campaign. (Sen. Hatch wrote an opinion piece for CNN in late March describing his granddaughter’s experience with the disease and calling the widespread prevalence of the disease – and the lack of any long-term treatment options – “nothing short of a public health emergency.”)

Estimates vary, but the average interval between presentation of symptoms and definitive diagnosis of endometriosis by laparoscopy (and usually) biopsy is commonly reported as 7-10 years. The disease can cause incapacitating pain, missed days of school and work, and increasing morbidities over time, including infertility and organ damage both inside and outside the pelvic cavity. A majority of women with endometriosis – two-thirds, according to one survey of more than 4,300 women with surgically diagnosed disease (Fertil Steril. 2009;91:32-9) – report first experiencing symptoms during adolescence.

Yet, too often, adolescents believe or are told that “periods are supposed to hurt,” and other symptoms of the disease – such as gastrointestinal symptoms – are overlooked.

“If we can diagnose endometriosis in its early stages, we could prevent a lifetime of pain and suffering, and decrease rates of infertility ... hopefully stopping disease progression before it does damage,” said Marc R. Laufer, MD, chief of gynecology at Boston Children’s Hospital and professor of obstetrics, gynecology, and reproductive biology at Harvard Medical School, also in Boston. “If we don’t, we’re missing a huge opportunity because we know that endometriosis affects 10% of women.”

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