March is endometriosis awareness month: Jessie Gurunathan shares her story

Story originally published in NZ Herald on Sunday 19th March

By Jessie Gurunathan

It’s often referred to as the brave face disease, and it’s believed that one in 10 women in Aotearoa suffers in silence. I am one of those women. I have an incurable long-term condition called endometriosis.

Endometriosis is when the endometrium (the tissue that lines the uterus) actually grows in places outside the uterus. According to the World Health Organisation, it affects 10 per cent of girls, those assigned female at birth, and women, worldwide. The month of March is endometriosis awareness month and is a time when you will see many stories and statistics being shared in an attempt to help increase awareness and visibility for an often misunderstood and misdiagnosed disease.

I had absolutely no intention of sharing my personal story this year, but ironically just as my column is due, I have a flare-up and am in chronic pain, so here we are.

Some of my symptoms include brain fog, nausea, abdominal bloating, extreme fatigue, and consistent dull pain that is often interrupted by sharp stabbing pain that shoots through my uterus and runs down my legs. These are just some of the things I’m experiencing while I lie in bed and attempt to write this. My story isn’t unique, but it would be remiss of me not to use this opportunity to help more of you look beyond the statistics and understand that behind those numbers are real people. We are daughters, mothers, grandmothers, sisters, aunts, friends, wives, and partners, all doing our best to navigate through life with a disease that steals so much from us.

From my very first menstrual cycle, I wasn’t like the other girls at high school, who were able to still go about their lives uninterrupted. My period would quite literally stop me in my tracks, unable to sit up and walk, I would be bedridden for days – the bleeding so heavy that I was always feeling light-headed and would sometimes faint at the most inconvenient times. Once, I’d asked to go to the toilet during class and when I got to the bathroom stall I passed out and woke up on the floor with my head bleeding after knocking myself on the toilet bowl.

I was yet to be diagnosed, and my doctors’ visits would result in me being told that what I was experiencing was just part of “being a woman” and that I would get used to it eventually.

Sadly, this is still a common experience for many young women, as there is a diagnostic delay of eight-plus years from the first presentation of symptoms to a doctor with a diagnosis.

As my undiagnosed symptoms worsened, so did my high school attendance rate, and I went from being an above-average student who sat some of my school cert subjects a year early to failing classes and being asked to leave school. I had just turned 17 and felt so incredibly lost. Still not understanding why my body wouldn’t function like everyone else, I felt such a deep sense of shame and failure, something I continued to carry with me well into adulthood. It wasn’t until my mother read an article in Next magazine about Kirsten Morrell, lead singer of the band Goldenhorse, in which Kirsten was describing her battle with a disease called endometriosis that finally led to my own diagnosis. I often think about that fateful moment and feel eternally grateful to Kirsten for her willingness to be vulnerable and share her story. Because of her, I finally found an answer after years of being gaslit by countless medical professionals.

Two and a half decades on, four invasive laparoscopy surgeries, broken relationships, numerous job losses and endless medical expenses, my path hasn’t been an easy one. I’ve lived with the consequences of severe stage 4 endometriosis for more than 26 years, that’s well over half of my life. There’s an immense amount of loneliness that comes with living in a body that so often betrays you, it’s a strange unspoken bond I’ve discovered I share with many who also suffer from long-term chronic health conditions. I will never forget the first time I met others who also lived with endometriosis. I burst into tears, overwhelmed with a sense of feeling completely understood and seen for the first time. That’s why raising awareness matters. I guess as I near the end of this piece, I’m reminded that this is why stories like mine need to continue being amplified because chances are, every single one of you reading this will know someone who is affected by this awful disease, whether you realise it or not. I encourage you to normalise conversations that help those affected feel safe and supported. Ask them what they need. Advocate for them, because let me tell you, it means the absolute world to have people in your corner fighting for you on the days you have nothing left in the tank.

Lastly, if you’ve read this far, I’d like to share an organisation that’s particularly close to my heart, Endometriosis New Zealand, they don’t receive any government funding and work tirelessly to ensure people like me get the help and resources we need. They’ve helped me and my family so much over the years, and I’d have been lost without them. If you or someone you know needs support, here is a wonderful resource:

You can also donate here

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