i know endo along with Billions of others around the globe Who’ve had their health concerns dismissed for years when there was something wrong

speaking up isn’t easy but here goes

As a child in pain

I doubted my ability to understand what pain really was or when i was really experiencing it growing pains are completely normal i must be EXAGGERATING the severity it’s just another stomach ache I’m far too young to know what it feels like to be in this much pain but here i am in the fetal position clutching the flesh of my tummy again on the shower floor in the morning before school because I can’t stand up it doesn’t come & go doesn’t disappear when i smile it’s a constant pulse of pressure in my abdomen my hips my thighs & it climbs straight through my diaphragm into my 8 year old chest I know pain better than i know my abc’s it never leaves me alone pain is always home it torments me so I know how to be quiet I know how to shrink i know how to hide but most importantly I know how to suck it up

As a teen in pain

i know how to fit in for the most part how to please how to act like nothing’s wrong because nothing’s wrong with me this is how everyone feels i don’t need help everyone’s anxious that’s just part of who i am I’m only dripping with trauma depression and OCD there’s still nothing wrong with me i cut myself I struggle with interpersonal relationships & understanding emotions my wellness is in the hands of doctors who tell me this is wellness so the way i feel inside of my body is irrelevant there’s no need to question it i don’t know what’s going on but i’m fine so just act like it

As an adult in pain

i have a hefty amount of knowledge on how to better handle my pms & my hysterical female brain pumped full of nonsense zofran morphine IV after IV to manage invisible pain in a healthy looking human being who happens to be vomiting uncontrollably purple hips blue ribs countless internal ultrasounds smear after smear ct scans x-rays Pregnancy and std tests but I’m as healthy as can be just lose some weight for me back to the er totally fine back to the er no GYNECOLOGICAL problems here back to the er normal colonoscopy wait it’s ibs another ultrasound and a few 5cm complex ovarian cysts on my ovaries filled with blood warrants surgery to remove them but then they burst & the surgeon found

endometriosis

instead

on average we suffer silently for 8-10 years before being diagnosed my experience has been experienced by generation after generation of human beings while the delay in diagnosis & complete lack of care or concern continues to disrupt our

PHYSICAL

emotional

& social wellness

in most cases we’ve reached out for help many times to be repeatedly denied & that destroys our relationship with ourselves

I didn’t know what was wrong or how to help myself because They told me i didn’t need help before they told me i did it tore my mind/body connection apart because I took on the persona of someone well enough to manage when i couldn’t but that’s all I knew how to do so that’s all i could do & honestly

I put on a damn good show

so

10 years of hormonal birth control cleared up my pizza face while throwing off my normal hormone balance and function adding to the now severe physical and mental health damage so i went off the pill a few years ago and tracked my cycle naturally before i knew i had endo I also stopped eating gluten before i knew endo was one of the reasons consuming certain foods sent and continue to send me into extreme bloat and discomfort I went on the low fodmap diet the autoimmune protocol removed all dairy to help myself because that’s what they told me would help honestly thought I would cure myself with nutrition But it turns out i didn’t because even today a banana can make my abdomen bloat enough that I look 9 months pregnant so I may have lost over 50 pounds but the pain has yet to come off

surgery & diagnosis

my best friend Carl helped me find the care I needed and This was the first time a medical professional listened to my medical history She wasn’t convinced that it was endo but the complex ovarian cysts pushed forward the surgery November of 2018 she excised endo from my uterosacral ligaments and Other inflamed tissue found in this area by laparoscopic surgery Excision by an experienced endometriosis surgeon is currently the gold standard of treatment but it DOESN'T cure it Endo has been known to reoccur after surgery while on birth control after having a baby or a complete/partial hysterectomy and menopause this is a widespread and chronic inflammatory disease that may never subside Endo has been found in every organ including the spleen the lymph nodes the lungs and even the brain it has been documented in men and we’ve had evidence of it’s pathology since the 1860’s and in ancient medical history that dates back to 1500 B.C, Tebas, Egypt but it still takes over a decade to get help

in my personal opinion repeat Surgery is not a realistic approach to handling or managing this disease long term unless the surgeon finds and is able to fully excise all lesions which means you have a team of experienced surgeons who know your specific case and believe you need help all of that is a massive privilege that most of us don’t have access to

recovery was terrible and My pain came back full force within a few months so while excision remains a massive privilege having to pay out of pocket thousands of dollars in the United states or willingly subjecting ourselves to the misery of repeat slices recovering but not quite because here it comes again gives humans no choice but to go under again because the last surgeon didn’t get it all didn’t look in depth so they didn’t see because endo attaches to our organs causing serious health concerns that may threaten our chance at having children whole intact organs the ability to walk or breathe

sometimes it risks our lives

I know endo

is how

i choose to push myself out of comfort into vulnerability & raise awareness

I asked friends/family to take a photo wearing or posing with yellow to help emphasize

visible support

Yellow is associated with many causes one of them is endometriosis on google there are hundreds of humans in yellow around the world raising awareness for the same cause so I’m extending this project to all human beings who are silently battling or watching a loved one struggle knowing little doesn’t mean we can’t learn more we should always invite growth

you have the power to say I know endo even if you don’t have it you can gain the knowledge to advocate for yourself & others while courageously using your voice because i know there’s a chance at handling this disease realistically with a community of support & you deserve wellness without having to look for it on your own

Severe pain is not a normal association with your

menstrual cycle

what I was going through was never just part of being a woman or something i had to get used to If someone had told me the truth I wouldn’t have had to spend my childhood ADOLESCENCE & adulthood battling this on my own so a big ol’ thanks to me advocating for my health standing up for myself and telling medical professionals there’s something wrong over and over and over again because even if 99% of them failed to listen 1% did those who’ve never questioned my pain or needed validation are the reason why i’m still here

thank you mum

for holding me through the pain

when i was a child

I hope this project reaches you if you’re in need & you see how many of us know endo & that you’re never alone

together we can share as much accurate information as possible about this disease

I pledge to be open to new information as time goes on I will never stop learning sharing or caring about this cause because humans who are endo experienced

need support too

amanda