Imagine you are a teenager. You are busy hanging out with friends, going to school, working a part-time job on the weekends, and playing on sports teams. Suddenly, you can’t do any of those things. Your classmates get bad periods too and can’t figure out why you keep canceling plans or missing school all the time. Eventually they just stop texting or calling.
This is often what it’s like when you’re a teenager dealing with endometriosis.
The reality of endometriosis
Endo is a poorly understood disease to begin with and even less understood when it comes to teenagers. Some doctors don’t even believe that teenagers can have endo, despite the fact that research points to endo being laid down in utero. Patients, especially younger ones, are often told “it’s just dysmenorrhea – take some Advil” from doctors and “periods are painful – you just need to get used to it” from friends and family who struggle to understand the impact of endo.
As a community of endo patients, we know endo is more than just painful periods and that painful periods that cause people to miss out on life should never be considered normal.
Nevan, a youth member of The Endometriosis Network Canada Facebook support group, knows all of this far too well.
She started experiencing endo symptoms at the age of 12 but was only able to get a referral to an excision specialist once she recently turned 18.
“Nobody would refer me [to an excision specialist] until I was 18. I can remember being 12 years old and just counting down the days until my 18th birthday because turning 18 meant maybe finally getting some help.”
Treatment plans for teens
Currently, the typical treatment plan for teenagers with endometriosis is to manage symptoms as long as possible with things like birth control pills and diet. The thought behind this is that it allows endo to mature and develop which makes it easier to see during surgery. GnRH medications like Lupron are not usually recommended for adolescent patients as they can negatively impact bone density, which is especially concerning for growing teens. If symptoms aren’t being managed well, talk to your doctor about other options, and consider whether your physician has expertise in treating endometriosis.
While some gynecologists will see teenage patients, many will suggest a pediatric gynecologist for patients under the age of 18.
If you’re unsure who to get referred to, The Endometriosis Network Canada maintains a list of excision specialists in Canada, however, not all of them will see patients under the age of 18.
Living with endometriosis
Endo can be an isolating disease, no matter what age you are. It is especially isolating when it seems like everyone else your age is doing things your body prevents you from doing. I asked Nevan if endo had impacted her social life. “I can’t even remember the last time I went out with friends or did anything outside of being with my family,” she replied. “All of my friends stopped coming around after I got sick; they stopped checking in or calling for me to come out. When I got sick I lost most of my friends. I missed my prom, my grad trips, all of my high school experiences because of endo.”
Aside from missing out on the typical teenage social life, endo can also impact teenagers’ access to education.
“I left school at the age of 12 because my symptoms were too much and I was too sick to sit through a day of school,” Nevan explained. “I do online school now, but I am incredibly behind and it’s very hard to have any motivation when you’re not doing well.”
Even if teenagers with endo are able to finish high school, post-secondary education can seem impossible. Moving away from home for school is especially difficult for teenage and young adult endo patients because they are removed from their support systems. Getting groceries, cooking, laundry, cleaning, school and self-care can be challenging to manage on your own when you have a chronic illness like endo.
Finding support
For Nevan, her support system is her family:
“I wouldn’t be here without [my family]. They understand more than anyone else because they see me deal with it everyday,” she said.
For others, it might be people with endo in online support groups like The Endometriosis Network Canada Facebook support group and for some, especially 2SLGBTQIA+ folks, it might be a chosen family. The SAGE Encyclopedia of Marriage, Family, and Couples Counseling, defines chosen families as “nonbiological kinship bonds, whether legally recognized or not, deliberately chosen for the purpose of mutual support and love.”
Nevan hopes that by sharing her story, other people her age to know they’re not alone and that there is hope.
“I hope any teen or preteen reading this who is struggling with endometriosis knows there are so many people suffering alongside them.”
“I hope they know that they aren’t being over dramatic and the pain is not in their head,” she said. “You are far from being alone in this journey. There are some big feelings that come along with being chronically ill; feel them, grieve them, but don’t suffer alone. Find your group, find your people and don’t let them go.”
Know that The Endometriosis Network Canada is here for you too.