How endometriosis disordered my eating

IMAGE VIA @conejoconalas/INSTAGRAM
WORDS By Angie Khoudair

Content warning: This article discusses eating disorders.

This morning I experienced a panic attack before opening my eyes. I set the alarm for 6am to experience the quiet before everyone else flicks appliances on and opens blinds. At 5.50am I was lying in bed, trying to resist the waves of panic but before I knew it I was in the kitchen and my body was in overdrive – what can I eat? What can I eat?

My increasing panic over food manifested first out of the fear I would never be able to solve the mystery gut symptoms I developed in my teens. I now know not to resist the anxiety and I’m learning to let it flow in and out, as best I can. But it took time to get here.

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This morning (and for the last five years) I’ve been at war with these thoughts. They tell me that food is the enemy. That food will make my symptoms worse and cause me to be stuck in a cycle of ill health. They control every single choice I make around food. I cannot remember the last time I ate something because my body craved it.

It isn’t about the food, though. Heck, I love food! My lineage is half-Polish-half-Lebanese; food is religion in my house. Ever since I was little, meals were always eaten together and I would look forward to them so much. But somewhere along the line, that changed for me.

At 25 I was diagnosed with endometriosis, approximately ten years after first presenting with symptoms characterised as bloating, difficult (if any) bowel motions, and persistent lower abdominal pain and pressure. These symptoms sharpened around the time of my period, but for years I had no idea there might be a reason for this.

Rewind to age seventeen

Back then, I had Hanson and Backstreet Boys posters on my wall and the Spice Girls and Eminem were playing on the stereo. Finishing off my HSC, I had the upcoming seven days in Queensland on my mind. Parties. Beach. Excitement.

But, deep down, I had an intense fear of being in a bikini. I would look in the mirror and dislike what was staring back at me. A changing body with more weight. I came home to a gap year. I had lots of free time on my hands and this was when my physical symptoms became louder.

At first, I only experienced the pain and discomfort before my period but after about a year I was feeling this way every day. I grew up believing most sicknesses could be cured with a trip to the doctor so I asked Mum to take me to our family GP, who diagnosed me pretty quickly with IBS – gut symptoms induced by stress, with no cure.

I was given a script for Metamucil and the pill. I didn’t want to settle for this. I knew there was something more. There had to be. That’s when the search began. I saw three more GPs. None could help, and one asked if I had seen a psychiatrist. The more doctors I saw, the more palpable the physical sensations became until I found myself sitting across from one of the best gastroenterologists in NSW.

He gave me antibiotics for apparent intestinal bacteria and told me I’d feel great in no time. When that promise was never delivered, I went to another gastroenterologist, and another, and another. I became angry and exhausted.

Endometriosis, which I now know I have, is a chronic condition in which tissue similar to the lining of the uterus grows outside of the uterus. It can cause a number of symptoms. I experienced heavy bleeding during my period; not being able to leave the house for the fear of not being able to control it.

My bowel motions stopped, and when I was able to pass, I would be in pain. I found it hard to sit for extended periods of time because my pelvic pain was so horrible. Some days I would be replying to emails at work while tears rolled down my face. When these symptoms were at their worst I spent hours on Google crying and searching for some kind of relief.

This process exacerbated my symptoms and I started hating my body for what it was doing to me. I saw close to a hundred practitioners and I begged some of them to explore my condition further. None ever made the link to my symptoms worsening during my period. After I felt as though traditional medicine couldn’t ‘fix’ me, I booked nutritionists and naturopaths and threw myself into various elimination diets. At no point was I asked what my diet was already like.

The restriction was depressing but every now and then I would lose a bit of weight. This appealed to me and I became obsessed. Every time my symptoms became severe, I eliminated foods and grew addicted to the illusion of control. After years of no relief, my only choice was to take matters into my own hands.

Mum and Dad stayed up for hours trying to figure out what was causing my symptoms. They were the reason I finally saw a gynaecologist. After my laparoscopy, endometriosis was confirmed. He diagnosed it, told me there was nothing he could do, and to come back when I was ready to fall pregnant. All I did was cry that day.

For the next three years, my diet took control of me. I didn’t know what else to do. I was working in a high profile PR firm, and being skinny and not eating very much was considered normal – it was rewarded even. I was too busy to worry! Three years later I got a second opinion. My boss was concerned because I was sick a lot and suffering mentally because of it.

This gynaecologist did an examination in my first appointment and I was booked in to have the endometriosis removed within a week. By then it was stage four and had spread through my pelvic organs and bowel. The surgery gave me some relief but within months the gut sensations returned, as if my body remembered the trauma. I defaulted to what I knew best. Eliminating foods.

After last year’s lockdown, my restriction became particularly bad. Restrictive eating was my unconscious coping mechanism for such a long time, that within just a few months and with a lot more spare time, panic attacks took over the second I lost control. Everything unravelled. I knew I was struggling with eating but couldn’t say it. I felt so ashamed and it took me months to ask for help.

My experience led me to a point where I became so terrified of eating when I wasn’t well that it was a disorder. My GP was very surprised because I had no deficiencies and fell within a healthy BMI. I assured her things were not right. Just because something is difficult to see, it doesn’t mean it isn’t there.

The years spent searching caused me a lot of grief. I am learning that trusting myself and being okay with who I am is a difficult journey. Endometriosis is still widely misunderstood and there is no known cure. If there was more awareness and better treatment of endometriosis and disordered eating, it may not have taken me so long to begin to accept and love myself.

I hope to see growth in endometriosis care and understanding among practitioners who have the privilege of listening to young women who know their bodies better than anyone. I write this not because I am out the other side of a dark tunnel of hardship, but because I’m still in it – I just see the walls in a different light.

I feel deep compassion for every young woman who has a similar story or who has found it difficult to accept themselves. My hope is that they can show themselves the same compassion, whatever their circumstances.

If you’re struggling with body image issues or eating disorders, you can call the Butterfly National Helpline at 1800 33 4673 for free and confidential support, or email or chat to them online here.

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