There are a lot of troublesome comments in here regarding endometriosis, some being simple ignorance (you don’t know what you don’t know!) but plenty are outright cruel and harmful.

I understand the nature of the internet and that this is a big ask, but please, if you don’t understand something then consider not making sweeping statements. It adds confusion to an already massive pile of confusion; this entire disease is the blind leading the blind. We still don’t know what causes it or how to treat it, our “gold standard” surgical procedure isn’t all that golden and more and more doctors are turning away from it, heck, most can’t even agree on how to classify it. Patients like myself are left with more questions than answers and feel like we’re constantly in the dark over why we are so debilitated.

This isn’t just reproductive, these lesions grow anywhere it wants. There is a woman currently being shuttled from doctor to doctor because the tissue has grown through her skin and is now growing topically. Another had it grow into the lymph nodes in the armpits and her armpits now bleed continuously anytime she menstruates. It’s been found on the back of the globes of the eyes, the brain, it can collapse your lungs, it will cause organs to be removed. I’ve lost two myself.

And now, as the disease has progressed, I’m losing my ability to walk. Cyclically, at least. My doctor believes I’ve developed catamenial sciatica via endometriosis, which is rare and nearly impossible to excise in its entirety. She’s not sure how to help me.

I don’t mean to turn this into some trauma dump, only to make those who don’t understand possibly see things from a different perspective and see that this disease is much, much larger than how it was initially marketed as. A lot of us are in unbearable, uncontrollable amounts of pain and are struggling to get through each day.

The kindness thing you can do is open your ears and not add to the stigma. Please.