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Pediatric and Adolescent Endometriosis

Many of our community members have shared experiencing endometriosis symptoms as young children, many of them experiencing symptoms with their first period.

We'd like to know, have you experienced endometriosis as an adolescent?

How old were you when you experienced your first symptom?

What were your symptoms like?

If you were diagnosed, at what age did that occur?

Please feel free to share your experience with pediatric/adolescent endometriosis.

  1. Hi

    My journey to diagnosis was a long one and not entirely clear. Even after diagnosis I get a lot of the "Oh that's normal for women" downplaying, which as a minor was confusing, upsetting, misleading, and kept me from getting the help I needed.

    I started puberty before age ten and was immediately extremely heavy and irregular. Luckily for me my elementary teachers were understanding, but not so for the majority of my middle and high school teachers. In late sixth grade I started puking on a regular basis and was still irregular. By the time I was in seventh grade I became known by my peers and teachers for regular absences and early leave due to nausea and puking, and was treated differently by some teachers for "being lazy" or "not trying hard enough" despite that I performed well on homework assignments and tests, and was on the Honor's track of courses, performing at levels higher than expected for my grade level. The health techs and nurses in my schools knew me by name I came in so regularly.

    In high school my sophomore year my periods became even more irregular, lasting longer than a week. It was around this time that I also started experiencing pelvic pain in addition to my usual puking. Because my doctor didn't know why I was puking all the time (and very well may have never heard of endo) I didn't have a doctor backing up my claims of illness and the school did not believe I was really sick. I had no protections and was treated like a lying slacker. Due to my frequent absenteeism I failed a class one year despite the teacher arguing on my behalf and the fact that I was a top performer in that class, getting 100% on every assignment and test.

    Later doctors I had after high school downplayed my pain and puking symptoms and didn't take them seriously. It wasn't until 2017 while in my mid-twenties I found a doctor who took my symptoms seriously. She didn't know what was happening to me, but looked into possible causes for me while also helping me manage my other health troubles and trying to balance them with my intense college courses. I came across endometriosis on a fluke while trying to research about something else. I talked to my doctor about the possibility and she agreed I should see a gynecologist. The gynecologist astounded the both of us by downplaying my symptoms. She wouldn't even run any tests about my pain. Unfortunately I had to switch doctors due to my primary care doctor being sent to another location, and I had to go on the hunt for an understanding doctor again. In 2020 I found a new doctor I really like and also took my concerns seriously. I tried another go about the endo suspicions and the gynecologist she sent me to equally took my concerns seriously and I was finally diagnosed. It took a long time to find out what was happening to me and while I have been diagnosed, now I'm on a new journey of trying to figure out how to cope and what this means for my future.

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