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hello humans

it’s about to get increasingly personal

 

As you may have noticed

i know endo

I’d say i’m rather endo-experienced

it has only taken me around 12 years to be able to say it

I trudged my way through the majority of my life holding onto the belief that this was just how everyone felt

as an adult, I have multiple chronic illnesses that cause chronic pain, inflammation, and every other ailment I dealt with in silence

My experience with endo comes with a few months of validation, over 12 years of sucking it up, with a dash of not looking sick, and a smidgen of disbelief in my entire self


As a young girl in pain

I doubted my ability to understand what pain really was and when i was really experiencing it. I was told that I was far too young to know what it felt like to be in pain. It might be difficult to understand, but I can list countless moments of time that I spent in the fetal position in absolute agony. or on the shower floor in the morning before school because I couldn’t stand up. Pain that didn’t come and go, pain that was constant and would come with waves of intense fire that burned not only in my abdomen, but down into my thighs, and glutes. Pain that shot straight through my diaphragm and into my chest and shoulders. By the age of 10 years old, I’d argue even at 5, I knew what pain was. I would miss school because of it. I was alone in all of it. But I also just learned how to be quiet and get on with it

As a teenager in pain

I questioned my entire self-worth because I was told my pain was psychological, and that my mental health issues were part of my personality and something I should just get used to. I already questioned my ability to understand pain, but now I questioned my ability to understand my own mind. Even when I asked for help with my anxiety, depression, ocd and suicidal thoughts, I didn’t get it. i struggled with interpersonal relationships and understanding my own emotions. at one point i decided to make up some kind of truth for myself – with lies, guilt and a whole whack of mental health issues. I always knew something was wrong, I just didn’t know what it was

As an adult in pain

with and having always had ALL of the symptoms associated with endo, I was given morphine or harder drugs through IV on every occasion which would barely touch the surface of my pain. They’d Pump me full of drugs, send me home with a pack of 10, give me Zofran, and send me home - each and every single time. After countless internal ultrasounds, ct scans, and x-rays. After the discovery of a complex ovarian cyst - which later ruptured, I was told by countless gynaecologists that what I was experiencing was not a ‘gynae’ problem. I was told that I had IBS. and that I had a generalized anxiety disorder. When I opened up and told my GP about my suicidal thoughts and self-harm behaviours from my past, she ignored them. I asked if she would give me a referral, because I needed to speak with someone, anyone. I told her that my anxiety, depression and ocd were so severe that i could not function. She explained that it would cost too much to see someone, and “it’s just part of your personality’

I’ve been a patient in the ER in hospitals in Vancouver, Burnaby, New Westminster, Surrey, Langley, Abbotsford, Chilliwack, and even on the island in Victoria. I’ve spent more time in the hospital than I have on vacation. If it wasn’t for an ongoing infection in my lungs, or bladder, it was for crippling abdominal pain accompanied by uncontrollable vomiting spells that would last for hours. I would be unable to control the motion of throwing up, so even while I had nothing left to spew, my body still went through the motion and would never fail to bruise my ribs and hips, leaving me admitted for days at the nearest hospital

I’ve been admitted for pain management in hospitals capable of helping me, and I’ve seen the lack of dedication in those countless tired eyes because I never received the care and compassion that I so DESPERATELY needed. What’s worse, i watched them fail others in my exact situation

I found out that

this is common, and on average women suffer silently for 8-10 years before being diagnosed

Here are a few symptoms that have been on going for over 12 years, and that were brought to the attention of countless doctors:

>>> Chronic abdominal & chest pain

>>> Chronic nausea & recurring vomiting spells

>>> Constipation & diarrhea

>>> Recurring lung & bladder infections

>>> Painful intercourse

>>> Mental health issues such as but not limited to;

severe anxiety & panic attacks

depression

OCD

emotional instability

self-harming behaviours

suicidal thoughts

many endo-experienced humans find a way to deal and live silently with these issues, which affect our

PHYSICAL

emotional

+

social well-being

in many cases, such as mine, we’ve reached out for help and have been denied the care we need on multiple occasions


because i lived with these ailments for the majority of my life,

I struggled with not knowing who I was, or who I was supposed to be

I struggled with my reflection and continuously set standards for myself that I couldn’t meet

I struggled with not knowing what was wrong, and not knowing how to help myself

I struggled with my ability to connect with others, and still do

I struggled with my inner voice that had been silenced by me, and everyone around me

I struggle with all of these things and more, to this day, but i work hard to rinse off the conditioning

I took on the persona of someone who was well, because i needed to believe i was

i struggle with being positive on a continuous basis because as humans, we aren’t supposed to have a plastered fake ass smile on 24/7, but everybody seems to think we do. I’m here to say that all vibes matter, and that we do not have to put on a toothy-grin to make someone comfortable if it causes us discomfort to fake it

birth control, surgery, and diagnosis

I spent 8.5 years on birth control, it cleared up my pizza face and caused severe physical and mental health issues. Once i had the ability to question the pill that had been messing around with my natural bodily functions I did research and found out that what we do know about the long term effects was enough for me. the fact that i’d been reassured by my doctor that there were no concerns regarding long term use - she was not informed, and birth control is the-largest-uncontrolled-experiment-on-women - it has been known to have many side effects and has been associated with a higher risk of breast and ovarian cancers. I stopped taking it in 2017

in January 2018, after a ruptured cyst caused infection and a ton of extra pain, a 10 night hospital stay and a colonoscopy done by a very young gastroenterologist – I had a bogus IBS diagnosis. The one thing that I can thank from that misdiagnosis is that I changed my entire lifestyle because of it. I stopped eating gluten. I stopped consuming foods that would send me into extreme bloat and discomfort, like garlic, onions, anything processed, high salt or high sugar. I went on the low fodmap diet, I removed all dairy, and I did a ton of stuff to help myself

I didn’t feel that much better, i just didn’t have as much added pain and inflammation previously triggered by toxic foods

Fast forward to August 2018, after another handful of ER visits, one doctor offered to give me a referral. He asked if I had a gynaecologist in mind. I did, and I can thank my best mate Carl for the introduction and for helping me receive the care I needed

This was the first time a medical professional listened to my medical history, not only was she engaged in my case, but she wanted to help me. She wasn’t convinced that it was endo, but she told me that the only way we were going to find out anything, was through laparoscopic surgery. I had this procedure done in November of 2018. I was diagnosed with endo which she found and excised from my uterosacral ligaments. Other inflamed tissue found in this area was also removed

Excision by an experienced endometriosis surgeon is currently the best option for treatment of endometriosis, but it does not cure it. Endo has been known to reoccur while on birth control, after having surgery, having a baby, or a complete/partial hysterectomy. I could try all of the birth control in the world – at the end of the day, this is a widespread and chronic inflammatory disease that may never subside

Endo has been found in every organ except the spleen, and has been documented in men

we’ve had evidence of it’s pathology since the 1860’s, and it’s been described in ancient medical history since 1500 B.C, Tebas, Egypt but we treat it the same


Surgery is not a realistic approach to handling and managing this disease

My recovery was terrible, and my pain is exactly, if not worse, than what it was before I had surgery, and i didn’t only have it burnt off, i had it excised

Nobody would subject themselves to the misery of this surgery, and the recovery, nor would we opt for something like this to be done yearly. Some humans have no choice but to go under and receive repeat surgeries because the disease attaches to their organs and can cause serious health concerns that threaten their chance at having children, or intact organs…

I was diagnosed in November 2018

I’ve had time to absorb it, but none of it has been easy for me

I designed project I know endo

and I’ve been pushing myself to step out of my comfort zone in order to raise awareness and share my experience

I know endo is not a phrase I could say until I received my diagnosis, but it’s something I could have said

I could have known better, and it’s something that the humans in my life can also say because they know me

I asked my friends and family members to take a photo wearing or posing with yellow, so I can emphasize how many humans in my life know endo because they know ME <

Yellow is a colour associated with many causes, and one of them happens to be endo. I did not choose this colour - a simple google search will present photos of humans in yellow getting together around the world to raise awareness for the same cause

I am extending this project to the rest of the world because we all know someone who is silently battling something we know nothing about. I knew nothing about endo, even though my cousin had it, my grandmother even mentioned it as a possibility for the cause of my pain over 7 years ago, but it didn’t matter. I didn’t know endo


i want to change that

I want to give you the power to say “I know endo” even if you don’t have it

I want to give you the knowledge to advocate for yourself

I want to give you the courage to use your voice

I want to give you a chance at handling this disease realistically

I want to give you the ability to recognize your own self-worth


Severe pain is not a normal association with our menstrual cycles and what I was going through was never just part of being a woman

If someone had told me the truth, I wouldn’t have had to spend the majority of my life battling this on my own; with no one to turn to

i say no one and i mean no one. I am the only person I can thank for having any kind of validation of chronic illness, including lyme disease in both my mother and myself (this story coming soon)

i told medical professionals there was something wrong, and they didn’t listen

the ones who have never questioned or needed validation are the reason i’m still here

I hope this project reaches you. I hope you see how many of us know endo, and that you’re not alone

I hope I can spread as much accurate information as possible about this disease, and I pledge to be open to new information as time goes on. I will never stop learning, sharing and caring about this cause because it is something I have waited my entire life to be able to do

I hope you see me & the humans who are endo-experienced

I hope you see the humans who support us

-amanda