"I'm 19 and endometriosis is ruining my life."

Each day I hide behind the facade of the person I present to the world. She is cheerful and untroubled as she goes about her day at work, at school, the gym, and various social activities. 

She lays down after her busy day and falls into a deep slumber. She wakes up refreshed and begins the process again.  

This version of myself is a fantastical illusion I have been maintaining for the last four years. I can no longer pretend that I am this girl. 

My endometriosis has turned my body into a stranger who I no longer understand.

Watch: What guys need to know about endometriosis. Post continues after video. 

The true pain of chronic illness collects in small moments that soon become too heavy to bear alone. Each loss weakens me deeply, another wound. I feel it ache when I lay immobilised in pain on the couch late at night. I feel it ache when I see another chunk of my hair has fallen out, a side effect of my hormonal treatment. 

I feel it ache when a scan returns a normal result. I feel it ache when I catch my reflection in the mirror, my once smooth skin now rippled with acne scars. I feel it ache when I am praised for losing weight, enabled by constant nausea and aversion to the foods I wish I could enjoy again. I feel it ache when I see other people my age enjoying the youth I feel has been robbed from me. I feel it ache when I wake up each day, becoming aware of my pain the first millisecond that I am conscious.  

My mind keeps track of each disappointment.

Charlotte at the end of Year 12. Image: Supplied. 

This story truly began almost 10 years ago, the first week of year five in the summer of 2011, at a primary school in regional Victoria. We had the famous 'talk' with all the girls in grades five and six, crowded into the multipurpose room. We sat cross-legged on the itchy carpet as our teacher shared the details of the mortifying things that would happen to us through puberty. We watched on in horror as she dipped a tampon into a glass filled with a melted raspberry Zooper Dooper. 

The next day, I got my first period. 

Since then, my life has been under the control of the mysterious and cosmic force of my periods, which I have become completely helpless against. My mind has blocked out much of the era before my diagnosis, saving the memories as a blur of pain, blood, medication, appointments and beginning to feel as though something was deeply wrong with me. 

Through the validation and support of my general practitioner, I sought the advice of a gynecologist. At each review, as my symptoms worsened and their suggestions proved futile, they became less interested in finding answers. 

A few months after my 17th birthday, my specialist looked at my mum, and told her that some girls, like me, just have "a low pain tolerance."

Charlotte and her mum, Mary. Image: Supplied. 

As my periods became more intolerable and impinged on my ability to complete tasks in my daily life, I felt as though I was weak. I powered through my year 12 assessments like a zombie, with pain so severe I sometimes felt like I might lose consciousness. I studied relentlessly, building up enough muscle memory to still achieve on the days where I felt I had no essence left. 

My mum was my biggest support through these trials, as she had experienced intense and painful periods as well. 

I began to research my symptoms and endometriosis continually came up. 

Endometriosis is a chronic condition where tissue similar to the tissue that normally lines the inside of your uterus, grows outside your uterus. According to the Australian Institute of Health and Welfare, one in nine individuals assigned female at birth in Australia live with endometriosis. 

The experiences of individuals with this condition seemed shockingly similar to mine. Early periods, history of painful periods in the family and extreme pain were very common symptoms. For the first time in a long time, I began to think that my pain was not just a figment of my imagination, but rather a chronic condition that would explain my poor health. 

Listen to The Quicky's episode on endometriosis. Post continues after podcast.

In July 2020, I had a laparoscopy to investigate whether any endometriosis was present. In the weeks before my surgery, I had vivid nightmares where I woke up from surgery in a daze, and the surgeon informed me that nothing abnormal was found in the procedure. Hundreds of voices then filled the room, screaming that I am weak, and that everything was all in my head. The voices howled with laughter and I woke up in a sweat. 

By August, the official pathology results confirmed that I had endometriosis. 

Like most diseases, individuals with endometriosis experience a spectrum of symptoms. Unfortunately, mine is inextricably intertwined with my daily existence. 

After my surgery, I promised myself that I would not let this diagnosis prevent me from achieving my dreams. Over a year after I made this promise, I feel I have broken it. As my pain, fatigue and associated co-morbidities have worsened dramatically this year, I am unable to picture my future without seeing the impact of this disease. 

I have been hospitalised five times this year so far for ailments related to or exacerbated by my endometriosis. This December I will have my third surgery in four years related to my menstrual health. I pray that it will be the last for a long time, but unless there is a huge breakthrough, surgery is the gold standard for treatment. 

Many people who experience chronic pain, like me, file away their pain in a part of their head they learn to ignore. When I reflect, I realise that I have felt unwell almost every day for the last four years. On the rare occasion when I have been given strong enough pain relief in hospital to mask most of my pain, I begin to understand the magnitude of what I survive each day. 

What breaks my heart is that many of the individuals who have dedicated their professional life to the study and practice of women's health, continually fail to recognise the struggles we face and offer us adequate support. I have found solace in endometriosis support groups on Facebook, where I have heard hundreds of similar stories of people being disregarded by their medical practitioners.

Only a few weeks ago I was told by a doctor in the emergency department that my excruciating pain was "just" my endometriosis pain flaring up. I sobbed while I felt as though my insides were exploding in a dangerous supernova.

Charlotte in hospital. Image: Supplied. 

She told me to "just take" over-the-counter pain medication in the future to prevent ending up in ED. As she said those words, I felt a wave of sharp memories resurface and relived each moment of being dismissed and invalidated by doctors. 

It was impossible to advocate for myself in this moment. I lay awake after I came home from the hospital replaying what had occurred, tears streaming down my face, feeling utterly helpless. I am still waiting to hear about the outcome of my complaint to the hospital. 

While I have encountered incredible medical and allied health staff who have validated my experience, I still feel that many individuals with endometriosis, including myself, have a poisoned perception of medical professionals from the traumatic experiences of their past. I find it difficult now to trust new doctors and practitioners in my care team, as I feel wary that they may not see the significance of what I have been through, and what lies ahead for me. 

The deepest sorrow is being made to feel that you don't understand your own body and that the pain you are experiencing so vividly is not real. This year I have become more passionate about the idea of becoming a doctor. Maybe this sounds bizarre for someone deeply scarred by medical trauma, but, for me, I feel that it would bring me joy to help other people trapped in a life of chronic pain and illness. 

Perhaps it will make each agonising memory worthwhile if I can afford someone else the empathy and compassion I wish I had been treated with. 

Endometriosis Australia estimates an average delay of six and a half years for individuals to be diagnosed with this disease. Many factors contribute to this time frame, including surgery being the only formal way for diagnosing endometriosis, as well as variable symptoms and lack of funding. 

Six and a half years is an incredibly long time to live in pain and discomfort with no answers. 

It is clear to me that systemic change in education for medical professionals and advances in research are needed desperately.

As I stare down the barrel of a life relying on prescription medications, surgeries, medical appointments, indescribable daily pain, fatigue and expensive premiums for health insurance, I feel bleak about what is to come.

I cannot fathom what I have lost as I approach 10 years since that fateful day when I got my period. Half of my life living like this. How can I begin to quantify what being well is worth? What would I sacrifice to have good health?

I think about all the times I have sobbed through my pain, desperate for it to end so I can live my life. There have been many nights where I have been awake until after 3am in intense discomfort, only to get up to go to work at 8am the next day. 

I respond to "how are you?" with a well-rehearsed "well thank you"; a mask to hide my pain. 

But despite the tumultuous last 10 years of my life, I have to recognise how lucky I am. I have amazing loved ones that support me through the darkest days of my illness. I am lucky enough to be able to continue working and afford my medical care. I have access to an endometriosis specialist team that is knowledgeable and understanding. 

I have a passionate team of medical professionals in my corner. Next year I will start the next chapter of my life in Geelong, studying a Bachelor of Vision Science and Master of Optometry at Deakin University.

In the most terrible times, I remind myself to find hope.

Hope in the medical practitioners that are truly invested in helping people with endometriosis limit our suffering. In the scientists that are one day closer to a breakthrough. 

In the power of using our voices to bring awareness to this condition. In the healthcare workers of the future who will attempt to heal the wounds of the past. In our families and loved ones that hold us gently as we face another day of suffering. 

Most importantly, I just have to have hope in myself, to know that my body is strong enough to make it through another day.

Feature Image: Supplied.

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