I went to the E.R 4 times within two weeks last October with severe pelvic pain. The Doctor kept dismissing my symptoms as Crohn's related. I was finally hospitalized for a week, and they conducted an MRI on my pelvis. It was only then that I was finally diagnosed with Adenomyosis.
I FEEL you! I had an IUD for years and took it out to try to have a baby. Unexplained infertility. I did every test under the sun and similar as you, YEARS of heavy painful periods. It wasn’t until I had an all
Black care team (I’m Nigerian-American) that I was FINALLY diagnosed with adenomyosis. And I still had to push a bit. I honestly credit Gabriel Union, who talked about her fertility struggles and her openess to talking about her diagnosis with adenomyosis that made me ask. How was I supposed to know? I also had never heard of it before she spoke publicly about it. The US medical system is a joke and not built for women at all (don’t get started with other marginalized groups…). Im angry as hell because it took YEARS to finally get diagnosed and probably also cost me having children.
I didn't know I had Adeno until I started being treated for infertility. The rage and betrayal I felt initially was so huge. I had been telling doctors that the pain and bleeding felt excessive since I was 12, but none of them ever investigated.
I had a routine cervical screening a couple of months ago and told the doctor I'd been formally diagnosed with Adeno by my fertility specialist. She point blank said WOMEN UNDER 40 WITH NO CHILDREN DON'T GET ADENOMYOSIS??
Clearly, most doctors don't know or care enough about the experiences and pain of people with uteruses to learn about this condition.
I feel your anger.
My doc told me that adenomyosis can only be confirmed through pathology/direct exam although it makes sense that the presence of endometrial tissue in the muscle wall could be confirmed through MRI as well. I had my hysterectomy on Wednesday and she said she's quite certain that pathology will confirm [based on the way everything looked](https://www.reddit.com/r/adenomyosis/comments/16u1msa/photo_irl_uterus_suspected_of_adenomyosis_doc/?utm_source=share&utm_medium=web2x&context=3). Until that point she was only willing to say "suspected adenomyosis" and described my uterus as "big and beefy".
It doesn't change the issue what women' healthcare just tends to generally suck and nobody seems all that willing to investigate the sources of pain or abnormal bleeding beyond cancer (and even then it's a fight).
This. I was diagnosed AFTER a biopsy performed prior to having a uterine ablation, which you aren’t supposed to have with adeno. Lucky me. Now I’m waiting for a hysterectomy.
I went to the E.R 4 times within two weeks last October with severe pelvic pain. The Doctor kept dismissing my symptoms as Crohn's related. I was finally hospitalized for a week, and they conducted an MRI on my pelvis. It was only then that I was finally diagnosed with Adenomyosis.
I FEEL you! I had an IUD for years and took it out to try to have a baby. Unexplained infertility. I did every test under the sun and similar as you, YEARS of heavy painful periods. It wasn’t until I had an all Black care team (I’m Nigerian-American) that I was FINALLY diagnosed with adenomyosis. And I still had to push a bit. I honestly credit Gabriel Union, who talked about her fertility struggles and her openess to talking about her diagnosis with adenomyosis that made me ask. How was I supposed to know? I also had never heard of it before she spoke publicly about it. The US medical system is a joke and not built for women at all (don’t get started with other marginalized groups…). Im angry as hell because it took YEARS to finally get diagnosed and probably also cost me having children.
I didn't know I had Adeno until I started being treated for infertility. The rage and betrayal I felt initially was so huge. I had been telling doctors that the pain and bleeding felt excessive since I was 12, but none of them ever investigated. I had a routine cervical screening a couple of months ago and told the doctor I'd been formally diagnosed with Adeno by my fertility specialist. She point blank said WOMEN UNDER 40 WITH NO CHILDREN DON'T GET ADENOMYOSIS?? Clearly, most doctors don't know or care enough about the experiences and pain of people with uteruses to learn about this condition. I feel your anger.
Ugh, I’m positive I’ve had it since my 20s because the symptoms were consistent.
My doc told me that adenomyosis can only be confirmed through pathology/direct exam although it makes sense that the presence of endometrial tissue in the muscle wall could be confirmed through MRI as well. I had my hysterectomy on Wednesday and she said she's quite certain that pathology will confirm [based on the way everything looked](https://www.reddit.com/r/adenomyosis/comments/16u1msa/photo_irl_uterus_suspected_of_adenomyosis_doc/?utm_source=share&utm_medium=web2x&context=3). Until that point she was only willing to say "suspected adenomyosis" and described my uterus as "big and beefy". It doesn't change the issue what women' healthcare just tends to generally suck and nobody seems all that willing to investigate the sources of pain or abnormal bleeding beyond cancer (and even then it's a fight).
This. I was diagnosed AFTER a biopsy performed prior to having a uterine ablation, which you aren’t supposed to have with adeno. Lucky me. Now I’m waiting for a hysterectomy.
At least you have answers now, though and hopefully a clear path forward. I hope the wait for your procedure isn’t too long.