I’m so glad USA Today covered adenomyosis. I struggled with this “silent disease” for decades. It caused my infertility and because I had go on hormonal birth control (which contributed to my DVTs) it nearly killed me. We need better treatments, even as Trump/DOGE is killing uterine health research. - ThreadSky

jacquelyngill.bsky.social • 64 days ago

I’m so glad USA Today covered adenomyosis. I struggled with this “silent disease” for decades. It caused my infertility and because I had go on hormonal birth control (which contributed to my DVTs) it nearly killed me. We need better treatments, even as Trump/DOGE is killing uterine health research.

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renaissancedreamer.bsky.social•64 days ago

Wow! I am too many decades old to have not ever heard of adenomyosis! And I have endometriosis! To me, that’s evidence of how very overlooked this condition is & how much of women’s suffering is ignored!

kittybard.bsky.social•64 days ago

Shoutout to the specialist I'm seeing; I was referred for endo-like symptoms, doc immediately added adenomyosis to the list of shit to screen for

So far my endometrial biopsy was normal, and I'm having a TVUS in ~1.5 weeks; if an MRI is needed, my biggest struggle is not falling asleep in them :P

jacquelyngill.bsky.social•64 days ago

I never had an MRI; mine was diagnosed by ultrasound (which an experienced ob/gyn tech can usually do) based on lining thickness and enlarged uterus, plus my symptoms (my biopsy was also normal, ruling out cancer). I hope you get answers soon!

kittybard.bsky.social•64 days ago

<3

I'm also angling for a hysterectomy, tbqh

I'm sick of my uterus stealing literally half my life, I and my longtime SO don't want kids, and I'm getting doctors on board to bully insurance into covering some kind of swimming/pool activity if they're so "concerned" about my weight :P

kittybard.bsky.social•64 days ago

(I'm *not* concerned about my weight, I simply understand docs + insurance are gonna want me to drop ~75lbs+ before a possible hysto and the only way I can safely do so energy- and joint-wise all involve being in a pool as often as physically able)

jacquelyngill.bsky.social•64 days ago

It might be time to get another doctor. I had my hysterectomy at 330 pounds and no one batted an eyelash. You shouldn’t have to wait for life-saving care. <3

kittybard.bsky.social•64 days ago

<3

That's around my weight atm, on a 5'2" frame XP

I'm making headway arguing (given how disabling my uterus is) I'm basically guaranteed drastic QoL + energy improvements upon yeeterus, which lets me actually recondition + stabilize my damn joints, generally be more active, etc.

sunhesper.bsky.social•64 days ago

I’m glad too & thank you because I’m pretty sure this is what I’ve been dealing with for years, including the horrible reaction when we tried an IUD. Add perimenopause to the mix and doctors are even more inclined to dismiss your symptoms. But I’m totally doing the color coded chart now!

bielleogy.bsky.social•64 days ago

The reason I went on birth control in my mid 20s. Diagnoses were basically "shrugs" until someone finally was like "you should not be having 2 week periods every month..."

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