‘My mom wiped my tears. ‘We won’t stop until we have answers. I promise.’: Endometriosis warrior shares 8-year diagnosis journey

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“‘The pain is in your head. You are overweight. Are you depressed? Are you sure you are really in that much pain? Have you tried Advil? Go home, take some Tylenol and get some rest. Periods are just painful! Everyone gets cramps. How do you spell that again? Oh, what’s that? I’ve never heard of that one before! You just need to exercise. You will feel much better after you get your body moving, what about yoga? You are too young to have that. I don’t know what’s wrong with you, I am sorry but I can’t help you.’

Since I was 12 years old, this is all I have heard. My name is Nevan, I am 19 years old, and I am chronically ill. I have a debilitating chronic illness that goes by the name of Endometriosis. For years, there was no name to my illness. I was a mystery. I didn’t know anyone like me, I felt like an ant in a giants’ world. The sick girl. The one who was so ill she couldn’t go to school, but in the same breath, the one who doctors looked at like she was crazy and sent her home because they couldn’t help her. My symptoms of Endometriosis came out before I got my first period. Extreme pelvic pain, nausea, vomiting, painful bowel movements, painful and frequent peeing, food intolerances, back/joint/leg/hip pain, extreme bloating, etc. You name it, I was experiencing it. I had no idea what was wrong with me, and clearly, no one else did either.

Courtesy of Nevan O’Grady

I was in so much pain every single day from December 2013 through March 2014 with no reason for it. It was debilitating and I was bedridden. March of 2014 came around and I got my first period. Of course, right off the bat, it was horrendous. I was always in pain, but this was a whole new level. I thought it was bad before, but really, I had no idea what was coming. I was leaving for Niagara Falls with my nana, her friends, and Eamon, my little brother, the same day hell decided to rain down upon me. I wanted to stay home so badly. I just wanted to be with my mum but I had to go for Eamon. I went to my nana’s house with a pad and some panty liners. It was my first period, surely it wouldn’t be obnoxiously heavy right? Wrong.

I had to get my nana to take me to Walmart to buy some pads, with my mum on the phone guiding me through to get the right ones. I bled through my clothes that night, I was so embarrassed. I again called my mum crying and she told me what to do and how to get the blood out of my clothes and off of my nana’s bedsheets. We drove to the falls that morning, got checked into our hotel, and went down to the water park. I can remember my nana’s friend telling me just to go have fun as I sat on the sidelines riddled with pain watching all of the other kids. She said this was just my life now since I am a girl. We get periods and cramps. She was right, that was just my life now and it had been for the previous few months, but it was not normal.

Courtesy of Nevan O’Grady

From that point on, I have just gotten sicker and sicker. I basically left school at the age of 12. I was so sick I physically couldn’t sit through a day of school. Nausea, vomiting, and being doubled over in pain were my everyday life. It was so bad. I was in the ER countless times before I had ever even heard the word Endometriosis. I was just going into the ER hoping someone would take the time to hear me out, and see how much agony I was in. They knew me by name, but still, nobody could ever tell me what was wrong, or what they thought could be causing my pain. I got excuses every time.

Now imagine, being a 12-year-old girl, and being forced to have enema after enema because they were sure that was my problem. I just needed to poop. That didn’t fix it? Well, then it was in my head of course. Periods were just painful. I was overweight. I was just depressed. I was (and still am to this day) looked at as a drug seeker – like I was only there for some quick fix. As if they actually thought I chose to wake up sick. Like I just decided to wake up in so much pain I had to leave school, friendships, relationships, etc. behind me as a child.

Courtesy of Nevan O’Grady

Out of all of the times I was in the ER, one nurse mentioned the word Endometriosis. One. I was in the ER weekly, and one nurse said, ‘This really sounds like Endometriosis, I’m sorry.’ She still couldn’t do anything for me, she had no advice or help to give, but she gave me a word I would carry with me for the rest of my life. I had no idea what Endo was and looking back, even the nurse gave me the wrong definition of what it is. I believe I was around 14, a solid 2 years into my journey. Hearing the word Endometriosis, going home, and doing our research was like catching my breath for the first time in what seemed like an eternity. But even still, doctors don’t take women’s health issues seriously, as we had grown to realize. I had to rule out everything else before Endo would even be considered.

Courtesy of Nevan O’Grady

After many more months of pain, being left in the dark, and lots of waiting, I was then referred to a gastroenterologist. We immediately did food elimination, but there was no change. It didn’t matter what I ate, when I ate, or how much I ate; I was always in pain. She then did a colonoscopy and a gastroscopy, and of course, found nothing. I will never forget her coming up to me and my mum after I woke up, and telling me everything was perfect and my insides were ‘perfectly pink like a watermelon.’ You never want anything to be wrong, but after so many years of living with chronic pain, you hope for something to show up so you have some sort of explanation for it. She ruled out what she could, but at the end of it, she had no idea what was wrong with me either.

I was losing weight, I dropped over 20 pounds in a month. She came to the conclusion I had vomited out the entire lining of my stomach and caused myself nerve damage. She also recommended I be seen by a psychologist because she thought I was depressed and that was causing me to be in more pain than I should’ve been in. ‘I am sad because I am in pain, I am not in pain because I am sad,’ I said as I choked back tears. That was one of the last things I said to that doctor.

Courtesy of Nevan O’Grady

As a then 14-year-old girl who had only ever known happiness up until my pain started, hearing that I was just depressed was insulting, and quite frankly still is. We were back to square one. No answers, not a single doctor on our side, but still fighting. At this point, we had ruled out everything else so it was finally time to see an OB/GYN. She pretty much immediately just threw me on birth control. This is the case for most women with health issues. Birth control is like a Band-Aid effect. It can mask symptoms, and help take away or regulate menstrual cycles. For me, this was not the case, and birth control did me no good. It made me incredibly depressed and borderline suicidal while I was still dealing with debilitating pain, heavy bleeding, etc. I made the decision with my parents to stop taking it. My OB/GYN at the time had no other advice. She suggested I go back and speak to my GP again. So of course, we did just that.

Courtesy of Nevan O’Grady

After more waiting, we were sent to another OB/GYN but this time at Sick Kids hospital in Toronto. She was an experience, to say the least. She put me on a med called Visanne and told me to stay on it until I was ready for babies. I saw her a few times and each time, I left in tears. Visanne was not working and because of that she told me, and I quote ‘I am 99.9% sure you do not have Endometriosis, Visanne would have helped you.’ She then went on to say joining Weight Watchers would be a good idea. I was 16. She wouldn’t refer me to any Endo specialists because I wasn’t 18, and most specialists won’t see people under the age of 18. It was that day my mum wiped the tears from my face, looked me in the eyes, and told me, ‘We won’t stop, Nev. We won’t stop until we have answers, I promise.’

Courtesy of Nevan O’Grady

Back to my GP we went. I was literally being thrown from doctor to doctor, nobody was on the same page, nobody knew what they were doing, and nobody knew anything about Endometriosis. It was one big waiting game. I counted down the days until I turned 18 since I was 12. I went back to my GP and demanded to be referred to a specialist. Enough was enough. I was tired and I deserve answers. Because of my age, we sent out two referrals. The first one was denied, because of my age and the second one was accepted! That feeling was indescribable. October 30, 2019, I got the news I would be seeing an Endometriosis specialist after almost 7 years of waiting. August 13, 2020. I woke up at 7:30 a.m., got ready, and my mum and I left to go to Toronto for my very first appointment with someone who actually knew about my illness. It was terrifying. In my 7 years of being ill, the only people to ever validate me and believe me were my family. The people who saw this fight every single day in real-time. That appointment was a breath of fresh air. I was heard, I was believed and I was put down on an OR list, meaning I was acknowledged for actually needing surgery.

Courtesy of Nevan O’Grady

It’s now April 2021, I have been fighting this illness for 8 years and I’m currently awaiting my surgery date. I am still suffering every single day, and this journey is nowhere near over. Endometriosis stole my childhood and the entirety of my teen years. This illness has caused me to miss out on so much in my life. I was made to do online school, I missed my prom, I missed graduation, and school trips. I lost countless friends because none of them understood or cared enough to try to. The friends I do have left I never see because I am bedridden the majority of the time. Making it from my bed, down the stairs, and to my couch is often my biggest win of the day, and I spend most of my time burning my bloated belly with a heating pad trying to provide myself with any sense of relief. I am still on Visanne, and it’s a waiting game until I can get a surgery date.

Courtesy of Nevan O’Grady

One thing has changed though, and that is how many people like me I have met. That is how much awareness I have spread, and how many people now know how to spell the word Endometriosis. Endometriosis is when tissue similar to the Endometrium grows in places all around the body, most commonly found in the pelvis. It takes on average 7-10 years to diagnose, and most people you come across who have Endometriosis will have a story similar to mine. one in 10 AFAB (assigned female at birth) people have Endo. There is no cure. Excision surgery is the gold standard treatment, but the disease will continue to grow and spread. Endometriosis is different for everyone. For some, they are only in pain when they are on their periods. For others, they have no pain and only find out when they struggle with infertility. And for people like myself, we are in pain all of the time. Period or not. Special occasion or not. The pain never ends.

Courtesy of Nevan O’Grady

I haven’t been pain-free since December of 2013. Periods are not supposed to interrupt your life. You shouldn’t be in so much pain you miss work, school, or have to cancel plans. And continuous pain that never ends is not normal. I wake up every single day knowing I am going to be in crippling pain, but will it be another day I can get through, or will I be forced to go through another useless ER trip? I never know, and yet I always do everything in my power to stay away from the ER because the trips go the same every time. I live my life at a solid 6-7 on the ‘pain scale’ and when I flare, you are looking at a good 11. It is unbearable. It’s screaming, throwing up, dizziness, passing out, having a fever, sweaty palms, laying on the bathroom floor, shaking, not being able to stand, red face hot flashes, contractions, migraines, and much more. Endometriosis is being in so much pain you want to die. I was 12 years old and in so much pain I didn’t want to do it anymore, and I am 19 years old now and I feel the same way.

Courtesy of Nevan O’Grady

I really don’t know if I would still be here had my mum and dad not believed me and listened to me when I first got sick. Their love and support continue to be the reason I get up every day and make it to the next one. I know there are people out there struggling just as much as me. I’m friends with some of them. But some people I don’t know will read this, and I hope it validates you. You are not alone. Your pain is valid; it is so real. It’s not in your head. Reach out, talk about it, be open about your journey and pain. You will thank yourself down the road, I know I do. Find your people. Find your support. Let them love you, let them see the bad times, and never let them go. Even sick, you are worthy of and deserve love. Your people are just as lucky to have you as you are to have them.”

Courtesy of Nevan O’Grady

This story was submitted to Love What Matters by Nevan O’Grady of Ontario, Canada. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more stories by Endo Warriors here:

‘Ugh, you can have my kids. Just relax and it’ll happen.’ My journey ended with a hysterectomy.’: Woman diagnosed with Endometriosis after years of infertility, finally finds peace in a ‘beautiful, unexpectedly child-free life’

‘I want to live in my parents’ basement with 13 kids and no husband,’ said 3-year-old me. One part is true. Babies, and lots of ‘em!’: Woman shares emotional battle with Endometriosis, knows she’ll someday ‘be a mama’

‘You need to isolate immediately.’ The chances of survival for me are extremely low.’ : Woman with asthma, stage 4 endometriosis says, ‘I’ve been fighting my whole life, I don’t plan on stopping now’

‘He’s going to leave you,’ it said. I cried and I shook. I wanted to be a mother for as long as I can remember.’: Woman with endometriosis keeps fighting

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