Why Managing Endometriosis Is Harder for Young People

Young people with endometriosis need our belief in their realities, our understanding, and our support.

[PHOTO: Black woman doctor talking to young patient]
As underdiagnosed and under-visible as endo and those with it are generally, that's often even more the case for young folks with it. Shutterstock

I’m Heather Corinna, a longtime sexual and reproductive life and health writer and educator, the founder of Scarleteen, and the author of three books, including the upcoming perimenopausal guide and tirade, What Fresh Hell Is This?

As someone long involved in the reproductive health of young people, and deeply invested in their well-being and visibility, I want to talk a little about endometriosis and young people.

As underdiagnosed and under-visible as endo and those with it are generally, that’s often even more the case for young folks with it.

Beyond the challenges and barriers endometriosis itself can cause for young people, and living with it causes for nearly everyone, there are a few extra issues specific to many young people with endo.


View this post on Instagram


A post shared by Rewire News Group (@rewirenewsgroup)

Young AFAB (assigned female at birth) people often think pain is their birthright, especially menstrual pain, sexual pain, uterine, vaginal, and other kinds of pelvic pain. Pain is normalized for them: They expect it. They—and others they may report pain to—often think it’s right.

For young people with endo whose family members also have gone undiagnosed—which is common, given endo and genetics, the difficulty of diagnosis, and common lack of the level of health-care access necessary to even have a chance at getting a diagnosis—endo symptoms can also be considered normal.

If what’s happening with you is what happens with your mom and your aunt and is what happened with your grandma, and everyone just bore the pain because that’s apparently your lot, who’s going to even know to consider having that pain investigated?

Even if your relatives didn’t specifically have endo, if pain with menses, sex, or childbirth, or any other pain “of womanhood,” has been dismissed, considered normal, or justified in your family or community, well … good luck getting yours taken seriously.

Avoiding reproductive health care because of previous or ongoing consensual sexual activity or sexual abuse and fear of discovery of any or all of these is another common barrier. Pain and other symptoms can also be assumed to be because of these things, and, again, normal.

For those reasons and more, it often takes a long time to even consider something might be wrong, and more time still to get past the emotional, social, and other barriers to even seek out health care to evaluate that pain.

Small wonder young people are even more underdiagnosed than their older counterparts!

And if the source of pain is endometriosis, nearly everyone with endo knows that getting to the initial visit isn’t even half the battle—because that visit is usually a long way from a diagnosis, let alone accessible, effective treatment and other care.

When and if a diagnosis is made and treatment advised, a dependent young person is dependent on adults—and not just the adults’ ability to pay for that care, but their understanding of the gravity of the pain and disruption endo causes—for care and daily accommodations.

Suffice it to say, especially in the current climate, young adults who are outside parents’ care or other support systems may find affording and managing ongoing care, including surgeries, anywhere from tremendously difficult to impossible.

Young people with endometriosis need our belief in their realities, our understanding, and most of all, our support.

This post was adapted from a Twitter thread originally posted March 10.