‘When I was 19 I woke up screaming in pain, as if I was in labor. A million knives were stabbing my stomach. I tried to get to the bathroom, but I couldn’t stand. It became a regular occurrence.’

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“When I was 19 I remember waking up screaming in pain as though I was in labor. I felt like my insides were on fire and a million knives were stabbing my stomach. I tried to get to the bathroom but I couldn’t stand up, I had to drag myself along the floor like I’d been shot… by the time I had made it I vomited and passed out. I’d never felt anything like it, and hoped I’d never have to ever again. Unfortunately I wasn’t that lucky, and it became a regular occurrence.

I was told over and over it was ‘just the pill’ or ‘just a bad period’ and it was ‘nothing to worry about’. One doctor told me it was ‘just arthritis’ in my back from years of being a dancer and to treat it with deep heat. I knew I had a few cysts on my ovaries but was assured they were no reason for concern. As I got older the pain got worse and I’d throw up while driving, almost pass out in public places, have to lay on the toilet floor at work, or cry myself to sleep on the shower floor in the middle of the night because running boiling hot water on my stomach until it burnt my skin was the only thing that helped. But I stopped going to doctors because they’d only tell me I was fine, so I just convinced myself to get used to it because after all, it was ‘just a bad period’.

Courtesy of Kellie Renee

For almost 9 years I lived through bursts of pure hell where I quite happily would rather have died than experience another flare up. Just as I was losing hope I found a specialist who changed my life. On top of Polycystic Ovarian Syndrome she discovered I had Endometriosis. She explained it’s where tissue similar to what lines the uterus spreads outside the womb and grows on other parts of the body causing debilitating chronic pain. Though I was terrified to learn there’s not a lot of treatment, no cure, and can lead to infertility, I drew comfort in the fact there was finally an explanation for my pain. For the first time in a very long time, I felt like someone believed me.

Courtesy of Kellie Renee

It still took me a while to openly talk about Endo and admit when I was in pain. I thought my friends would stop inviting me places assuming I was too sick, I’d never have another boyfriend because one guy had already gotten angry at me for bleeding on his bed sheets, or I’d never get cast in any shows because people would think I couldn’t handle it. I pushed myself to do a lot of things when I probably should have been taking more care of myself, but in a way it also made me realize how strong I am… like being able to walk off stage between scenes, throw up, & then walk straight back out on stage into a high intensity dance routine like an absolute rock star.

One of the hardest things I’ve found about living with an invisible illness is feeling as though I’m constantly having to justify myself because I’m continually told ‘oh but you don’t look sick’, and having to awkwardly fake smile my way through so many insensitive comments from people who I’m sure mean well, but are actually quite hurtful. I’ve had people tell me to ‘just get a hysterectomy’ or ‘just adopt’, as though it’s as simple as buying a loaf of bread. People tell me to ‘just relax and you’ll be pregnant in no time’ as though a bottle of wine and mood lighting will eliminate the fact my body has a disease. Or people try to down play it with things like ‘at least you don’t have cancer’ or ‘it could be worse’, yeah it could be worse, but it also could be a lot better. And then there’s all the people who think they have the cure…for your incurable illness…like ‘just rub lavender oil on your temples’ ‘hold crystals on your ovaries’ or ‘drink celery juice’. We’re continually doing absolutely everything in our power to get better with very little result, so you can understand why people always implying that just eating some kale is going to solve all our problems can get quite frustrating.

Courtesy of Kellie Renee

Endo effects my life in some way every single day and most likely will until the day I die, and sometimes that can be a hard thing to accept. It’s hard to accept I’m in pain at some point every day and no matter what I do that never changes. It’s hard to accept that eating a piece of chocolate makes me look 6 months pregnant, and I have to plan my outfit based on what I’m going to eat that day because I might not be able to zip my pants up by 5pm. Its hard to accept I might not have kids, and my hormones are so whacked that one minute I’m fine and the next minute I’m crying because I put too much filling in my burrito and it all split open when I tried to roll it up. And it’s hard to accept because of the stigma around women’s health, I’m somehow expected to act like I’m handling it and I’m absolutely fine with the fact that no matter what I do to help myself, Endo is always there. I try to keep positive but it’s not always possible. Not constantly being angry about having to regularly endure a level of pain most people never even come close to feeling just once, is really hard thing to control.

Courtesy of Kellie Renee

I don’t know what the future will hold for me, and sometimes I really wonder how I will survive if I can’t fall pregnant… but I just try to focus on tomorrow and survive one day at a time. Not every day is hard, and I still have a great life and plenty to be thankful for. I have the most understanding and supportive partner I could ask for and just having him by my side encourages me to keep going. It’s easy to feel like less of a woman when your body won’t do what its built to do and even easier to dislike yourself on the days where your endo belly is the size of a whale all because you just wanted to enjoy a simple cup of coffee. Having someone who loves me no matter what really helps me to love myself a little bit more too. I’ve also recently started an Instagram account documenting the reality of living with gremlins in my uterus to hopefully help raise awareness and let other women who may be suffering in silence know they’re not alone. We deserve the right to speak out about what we live with, without being made to feel ashamed.

Endometriosis really is the toughest thing I’ve ever known… but I like to believe deep down I am tougher and I will keep getting back up to kick its butt each time it knocks me down.”

Courtesy of Kellie Renee

This story was submitted to Love What Matters by Kellie Renee. You can follow her journey on Instagram here. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.

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Read other inspiring stories about living with chronic illness here:

‘By the time I clock out and leave tonight, I will have been in the building for 14 hours. 3 as a patient, and 11 as an employee. This is invisible illness. This is dysautonomia.’

‘She’s just a nervous child.’ The words still burn. I was 13, about to start high school. But I was different. My life was consumed with excruciating pain, diarrhea, and the toilet.’

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