Good morning! @ms_creilly here. Today is March 1, and you know what that means: It’s officially Endometriosis Awareness Month! As RNG’s legal fellow, and resident endo-haver, I’m doing a short thread to kick things off.
I was diagnosed with endometriosis over five years ago but like most people with endo, I lived with symptoms for almost a decade before that. Symptoms like excruciating periods, erratic bleeding, pain between periods, and gastrointestinal and urinary dysfunction.
Endometriosis is an incredibly common chronic illness that occurs when tissue similar to the lining of the uterus grows elsewhere in the body. It can cause pain, fatigue, infertility, and organ dysfunction. A lot more on that here: rewirenewsgroup.com/article/2020/1…
Endo is most often thought of as a reproductive disease, but it can show up pretty much anywhere in the body, including the lungs and brain. It’s also not just a woman’s disease! Trans and nonbinary folks can get endo, and in rare cases it’s even been found in cis men.
One in ten people assigned female at birth will be diagnosed with endo in their lifetime, though that number is likely higher in reality because it’s so hard to get a diagnosis. Medical misogyny, racism, and transphobia also play a significant role in poor endo care.
Treatment for endo is also…kind of a cluster. I found a specialist who performs excision surgery, where the lesions are surgically removed. It’s not a cure, but it’s the gold standard in endometriosis care and it has a low recurrence rate (meaning the disease rarely comes back.)
The frustrating thing is, even though it’s effective, excision surgery is really hard to access. Only a handful of docs nationwide are skilled enough to do it, and it’s not always covered by insurance. More on that here: rewirenewsgroup.com/article/2018/1…
Accurate information about endometriosis is really hard to come by—even from medical professionals. I once spoke with an endometriosis specialist who said endo patients know more than “90% of OB-GYNs” because we have to become experts to get the care we need.
This is why I am so excited to announce that all this month, RNG will be providing coverage of endometriosis that is medically accurate, patient centered, and intersectional.
There will be articles! And share graphics! And Twitter threads! Make sure you’re following us here on Twitter, and if you don’t already follow us on IG find us @ rewirenewsgroup
That’s all for now—I’m signing off and handing back the keys to this account to the RNG team, but be sure to follow me over at @ms_creilly for all things repro and endo (and some Sheldon Whitehouse thirst.)
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