Endometriosis Symptoms When I Was a Teenager
Last updated: September 2022
The Office on Women’s Health says endometriosis affects 11% of U.S. women, or people with periods, between the ages of 15 and 44. They say endo is most common among those in their 30s and 40s.1
It’s easy to look at these numbers and think teenagers don’t get endometriosis. But studies show most people with endo report symptoms during adolescence and that there’s a delay in diagnosis by around seven years.2
If you do the math, that means many teens likely have endo. It’s just that the diagnosis happens a lot later than it should.
That certainly fits with my experience.
Endometriosis symptoms in teenagers
I didn’t learn about endo from a doctor. I recognized myself as a character in a book. Her period symptoms sounded much like those I’d had since I was 12 or 13.
At 24, an OB/GYN who’d treated a friend with endo finally diagnosed me with the condition. But as a teenager, I experienced the following every month:
Terrible period pain
My severe menstrual cramps started in middle school. They were just as bad back then as today, and I’m 41. But like many other endo warriors, no one believed me when I said they were debilitating.
But I didn’t just get terrible period cramps when the bleeding started. I’d have:
- Heavy bleeding
- Nausea and vomiting
- Blurry vision
- Leg and back pain
Now I manage my period pain with anti-inflammatory medication prescribed by my doctor. These meds also cut down on my nausea and leg pain.
Ongoing back pain
I’ve always had certain back pain before and during my period. As a teenager, I couldn’t stand or sit for long periods without aches or butt and leg numbness.
As a middle schooler, that back pain made it much harder for me to do extracurricular activities such as marching band, drama club, dance, or sit in class, especially around or during my period.
My pain wasn’t normal, and I knew it. So I asked my mom to take me to a doctor.
I can’t remember if anyone ordered X-rays or other tests. But I know that no one came up with any treatment plan to help me feel better. No one seemed interested in exploring the source of my pain.
I have the same issues 25 years later. I manage with physical therapy and a pain management plan approved by my doctor.
Like many others, I was labeled with irritable bowel syndrome (IBS) many years before my endometriosis diagnosis.
I’ve always been lactose intolerant. As a teenager, I’d sometimes get diarrhea or constipation for no reason. No one linked these issues to endo or my menstrual cycle until my 30s.
Migraine is a neurological condition. It’s more common in people with endo than those without the condition, especially if you also have adenomyosis.3
But no one mentioned migraine when I started getting blinding headaches in high school.
Again, my symptoms were so bad I asked my mom to take me to the doctor. They assured me I didn’t have a brain tumor and told me to take some over-the-counter headache medicine. The OTC meds never helped.
I found out about migraines in my mid-20s. My roommate had the condition and suggested I talk to my doctor about it.
Now I have migraine-specific medication that helps.
Issues with mood
People with endometriosis report high levels of depression and anxiety. I was diagnosed with these both in my teens and early 20s.4
I also had clear signs of pre-menstrual dysphoric disorder (PMDD) early in my menstrual life. But I didn’t learn about PMDD or how to manage it until my 30s.
And as an adult, I now manage my mental health in many ways.
Pain during sex
I didn’t have penetrative sex in high school. But I did have orgasms in other ways.
I’d often have severe pelvic pain afterward. Later on, I learned this was a sign of pelvic floor tension.
Penetrative sex was physically impossible until I was 24, after my first endometriosis surgery. When I did attempt to have intercourse in my early 20s, the pain was searing. It felt like I was being stabbed with a hot poker.
Excision surgery and pelvic floor therapy were a game changer for my sex life.
If you have any of the above symptoms or know a teen who does, bring them up with a doctor. Seek out an endometriosis specialist if your or your teen’s OB/GYN refuses to consider endo.
Which symptoms are you experiencing the most this week? (Check all that apply):