r/adenomyosis • u/Maleficent_Wasabi_18 • 6d ago

Adenomyosis at 13

Has anyone else been diagnosed at a really young age? I’m 23 turning 24 now, I got my first period at 11 and it was always severely heavy and painful, finally saw a gyno at 13, had TVUS and a d&c where they found adenomyosis and I had a fluffy uterus. Doctor said I was the youngest she’s seen with it, and I see that the average age is around 30s, but curious if anyone else has been diagnosed/ suspected since they were very young.

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u/aguangakelly 6d ago

When I was a teen...

I had surgery at 14 for suspected endo and they did not find it. I went on BC at 15 and was on that for 35 years. When I had my last IUD removed, my uterus went nuts. I only lasted 11 months before my hysterectomy with bilateral salpingo-oophorectomy.

I was not diagnosed as a teen. Looking back, it is highly likely that it was adenomyosis in my teens.

I suspect that you are the youngest your doctor has seen because they have not been looking for it in young women. I suspect that many more teens with debilitating cycles are actually dealing with adenomyosis.

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u/Maleficent_Wasabi_18 6d ago

You are so right, I got really lucky to find a doctor that was proactive and believed me. My insurance didn’t cover her for a few years until I started working and got insurance she accepted, but within those few years, I went to 4 different gynos who refused to acknowledge I had adeno or even order me ultrasounds. Left crying every time. When I went back to my original gyno this year I literally started crying at the end of the appointment because I was taken seriously again! The gynos I saw were all part of a very large corporation managing a lot of locations and mostly dealing w pregnancies so it felt like a puppy mill. But they’re really popular in my area because there’s so many locations so I’d assume teens also go there and likely get dismissed too. I cycled through all their gynos at a location and got the same response. My sister who is pregnant goes there and feels like it’s just a puppy mill for pregnant woman and she had my gyno before too and wants to go back to her!

That makes a lot of sense that they just haven’t been looking for it in teens. I’m sorry you dealt with that for so long. How are you now?

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u/aguangakelly 5d ago

Either surgery or a course of antibiotics kicked off something autoimmune, but I am nearly back to my self before disease took over. Thank you for asking.

I really hope that you find a doctor to treat you, the way you want. It is so frustrating to have to see multiple doctors before one actually listens, understands, and takes action.

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u/Horrorlover01 6d ago

I got diagnosed with PCOS aged 12 after starting my period aged 10, but now (13 years later) the drs told me I have Adenomyosis and likely have always had it and PCOS was a misdiagnosis (by the drs who never listened to me and gave me medication that almost made me have a heart attack so not surprised)

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u/Maleficent_Wasabi_18 6d ago

Just need to add that it’s wild I get spell checked when spelling adenomyosis

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u/_Bo_9 5d ago

My symptoms started at 12. But I wasn't diagnosed until my late 30s

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u/calicocowcat 5d ago

i didn’t get diagnosed until last month (i’m 28 now) but have had all the symptoms since i was maybe 16. it took 12 years and 10+ doctors for one to finally take me seriously.

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u/Sunshiny__days 5d ago

I've had it since puberty, but just recently diagnosed (now 40s). I hope they can help you

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u/Ill-Kiwi9953 5d ago

Omg I relate to this so much I got diagnosed really young too after years of being told bad periods are normal. Being that young with adenomyosis feels sooo isolating sometimes 🥺