after endless hospital visits it turns out I’ve had Ehlers Danlos + POTS + PCOS this whole time and it took over a decade to find a doctor who didn’t say “learn to relax and lose weight.” THREE debilitating chronic illnesses left neglected until I was too sick to function. Medical misogyny kills. - ThreadSky

lola.nebula.tv • 21 days ago

after endless hospital visits it turns out I’ve had Ehlers Danlos + POTS + PCOS this whole time and it took over a decade to find a doctor who didn’t say “learn to relax and lose weight.” THREE debilitating chronic illnesses left neglected until I was too sick to function. Medical misogyny kills.

Reposted from Lola Sebastian

i saw a new doctor today who treated me with so much dignity and respect and worked so hard to figure out how to help me that i felt like i was the patient in an episode of an early 2000s medical drama seconds away from witnessing a love triangle or death by helicopter

Comments

makemineoolong.bsky.social•19 days ago

I am so sorry, I am going thru this, oh you don't exactly have the terrible disease yet monitoring (dna sez I will). I don't know if I want the other shoe to drop.
I do have 2 good Docs tho, they both listen & that's saying something these days.
It's the suspense that is making me crazy.

amawrter.bsky.social•19 days ago

Yes, medical misogyny kills. But, as a 65 yo man who started having body issues at age 12 (can trace it back to age 3) not diagnosed until I was 60‼️ My body is so damaged that my Ivy League docs say meds and regular PT are my only thing I can do. New right shoulder 2022 - "trashed" said the surgeon

kissane.bsky.social•21 days ago

I am so grateful that you finally have the necessary dx, and so sorry it too so long. Without elaborating, I really, really hear this.

lola.nebula.tv•21 days ago

❤️❤️❤️ means so much

samuraiko.bsky.social•18 days ago

Sucks that you got a trifecta of UGH, from someone who also has PCOS (which has apparently also led to MASLD, in my case!). but at least you FINALLY have an answer!

Wishing you much success with your future treatment! :D

lola.nebula.tv•21 days ago

I’ve been sick and in pain since I was 11 and doctors told me to take more bubble baths, practice good sleep hygiene, and that I’m “too young to have chronic pain.” So grateful for my current doctor and so sad it took so long to get help.

qvail.bsky.social•21 days ago

I feel this so much. It took me 27 years to even get a diagnosis of hEDS, and my doctor is still digging.

filmcriticmaybe.bsky.social•19 days ago

Jesus Christ. In any sane society that would be medical malpractice

I'm so sorry you had to suffer needlessly for so long without assistance Lola. Legitimately disgraceful

ectoplasmiic.bsky.social•21 days ago

Sorry that you had to deal with that for so long :( and congratulations on having a path forward!

ahappyhiveling.bsky.social•21 days ago

Still far too many doctors about who need to learn that you can't explain every illness suffered by women as Wandering Womb Syndrome.
Still, I'm glad you've found someone who's taking your health seriously, and I hope things start to improve for you soon.

jerawizard.bsky.social•18 days ago

I also have EDS! I've been in vast amounts of pain for like... ever. I've JUST recently found a pain management routine that works a little better for me, and it's such a game changer. I really feel like myself again. I hope the same for you <3

lola.nebula.tv•18 days ago

aww wow 🥹 thank you so much for the well wishes !! physical therapy is a real game changer so far ❤️ i’m so glad you’ve found your groove !!

understatesmen.bsky.social•21 days ago

my sister almost died for similar reasons – she has type 1 diabetes, every doctor for a decade told her there was nothing wrong, she passed out while driving and while she was in a coma in hospital somebody *finally* went 'oh ketoacidosis isn't a normal symptom of a car crash huh?'

understatesmen.bsky.social•21 days ago

for over a decade she was told she was imagining it, there was nothing wrong, the tests showed nothing, she was just anxious and/or underweight, and it took her body eating itself for somebody to finally pay attention

lola.nebula.tv•21 days ago

i am so so sorry 😞 i’ve become very disenchanted through hearing so many stories like this

understatesmen.bsky.social•21 days ago

She's okay now, to be clear! This was a long time ago and now that she's properly medicated she's doing a lot better, it's just ... incredibly frustrating and frightening that it needed to get that bad, because she was a teenage girl so she must just be hysterical, right?

maddzhaus.bsky.social•21 days ago

It’s especially frustrating finding out how common those all are, often together, and how absolutely debilitating they can be without support, all because medical misogyny is so baked in to the industry that it often takes another patient telling you about it to even hear of them!

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