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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.

    1. just wanted to firstly say, thank you for sharing your story and journey with us. It is so frustrating when I hear others had to experience others downplaying their symptoms 🙁 It certainly is confusing and misleading, especially when you are young and don't know what else to do! But my goodness, you have been through a lot dear warrior. I am so proud of you though for continuing your fight until you found someone who was willing to help you and diagnose you! Our stories are so very similar. I was so sick all the time and the school nurses always knew me by name. I wasn't the best academically though - and many thought my struggles with taking exams and tests was because I was lazy and always trying to get out of doing it. But the fact was, I just really did not feel well. I hope, and pray, that things will change in schools/the medical field. Especially for the younger girls going through this. It can be so easy to feel as though the grownups are "right". I believed that for so long- until 2017! When I finally found a doctor to listen to me and diagnose me.

      It is definitely a whole other journey once you are diagnosed and it can take time to figure out how to handle and cope. But I want you to know one thing, you are not alone. This entire community is here for you. So reach out anytime you need! Thank you so much again for sharing your story with us! How have you been feeling lately? -Kimberli (team member)

    2. Yes it's frustrating when people down play Endo. After my diagnosis, my Mom and two sisters didn't look into it at all. They just believe that Endo is heavy irregular periods and debilitating cramps. It didn't even phase them that I had two miscarriages in one year.

      I am so happy to hear that you finally had a doctor listen to you and a GYN who did something.

      My biggest advice to newly diagnosed EndoWarriors: Grief is normal and it's not linear.

      I wish you all the best on this new journey.

  2. Thank you ! That means a lot~
    That's so interesting how our journeys have had so many overlapping points...I hope the medical field and schools make changes as well, I think a lot of girls could get the help they need earlier if they did.

    Lately I have been fighting the puking problem again,and stressing over trying to find a job that I can do. Just about every job in my area is manual labor and/or has really strict regulations that would prevent me from doing damage control during an unexpected episode. I'm scared I won't be able to keep a job and support myself, and will end up homeless again.

    1. I'm so sorry you are experiencing difficulty with vomiting and finding a job in your area. Just thinking but have you tried looking for remote work? I feel like after the pandemic, many companies have opened up opportunities to remote work. Websites like and might be a good place to start. Sending so much love your way. ๐Ÿ’›๐Ÿ’›๐Ÿ’›

  3. I was 13yrs old when I got my first period and it was Endo at first bleed. I bled super heavy, which resulted in me having to layer pads on top of each other and a wad of toilet paper. I would have to change that every hour. At night, I ended up having to wear diapers otherwise I would have to wake up every hour to change the pads. What teenager wants to wear diapers?

    My Mom said it was normal to bleed like that even though my older sister and herself bled lightly.

    In grade 8, I learned the hard way to always carry a pad with me. I got my period a week early, while in class. I bled through my skirt and onto the seat. While getting up to go ask the teacher something, one of my friends quickly flagged me over to her. She told me about my skirt and I was mortified. I grabbed my sweater and wrapped it around my waist before asking the teacher if I could go to the bathroom. I called my Mom and got her to bring me underwear, pants and pads. By the time she got there and I was changed, class was dismissed. I had to quickly head back to the classroom and grab my stuff. Thankfully, someone cleaned the seat off.

    I also ended up with debilitating cramps the next year and horrible PMS. I even remember one day in high school it was so bad that I taped a sign to my back in the library that told people not to bother me because of how short of a fuse I had. When I was 17, I took the depo shot for 6months to help with my periods. Instead of PMS, I felt really happy. I joked with my best friend who also had horrible periods, "so happy I could poop cupcakes and rainbows". I didn't bleed the entire time and it took an additional 8months after stopping the shot before my period came back. My periods weren't as heavy and my PMS was a lot better.

    It wasn't until I was 19, when I decided that I had enough and talked to my doctor about it. He sent me to a GYN, the same one I see today, and she told me that she was pretty sure I had Endometriosis.

    1. Goodness your story breaks my heart. I can 100% relate to the stained clothes and seat part. For whatever reason, I never told my mom about it all even though I know she would have comforted me. I think so many people in this community can relate to hearing a parent or family member say "it's normal" which is so frustrating. We all know now that that amount of bleeding and pain is NOT normal. I hate that it took so long to figure out but I am so glad you're with a GYN that pinpointed it and is with you still. Thank you for sharing your story with us Ray. I'm so grateful that you're in this community with us. ๐Ÿ’›๐Ÿ’›๐Ÿ’›

    2. It was absolutely mortifying. I know I definitely wished to be swallowed up by the Earth at that moment.

      Despite being told it's normal, I never knew anyone else who had it like me except my ex best friend. She had it worse than I did. She wouldn't show up to school when she had her period. Her cramps were extremely debilitating. When I got my diagnosis, even though we weren't friends anymore, I messaged her to say she may have Endo and to see a doc about it.

      I got really lucky cause the GYN was new to my town, had just become a GYN and I was her first Endo patient. I don't know how she knew about Endo but I am so grateful she did. I am also happy I was her first because it helped pave the way for all the other Endo patients she sees.

      I am so grateful to be here in this community๐Ÿ’›๐Ÿฅ„

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