A Warriors Journey to Hope

It all began with the onset of puberty…

From the very beginning of my reproductive journey, my menstrual experiences were far from ordinary. They unfurled like erratic chapters of an unpredictable novel, where heavy flows would punctuate months of ceaseless bleeding. In contrast, I'd then encounter months on end where my body refused to shed a single drop of blood.

During those tumultuous teenage years, the emotional tempest that accompanied these irregularities earned me a rather unwelcome nickname – "grumps." The basket of emotions I navigated was relentless. I loathed feeling despondent, grappling with bouts of depression, anxiety, and the desperate allure of alcohol as an escape from the emotional and physiological chaos my body was inflicting on me. At times, anger would surge within me, leading to impulsive decisions that promised a brief, yet tantalizing dopamine hit – a momentary respite from the chaos.

My life felt like a seesaw, no one could predict whether I was on the ascent or descent. The crutch of alcohol offered no solace; if anything, it exacerbated the anguish and inflammation that had become my unwelcome companions.

One thing stood out – relentless fatigue. I was in the prime of my youth, brimming with the potential for boundless energy. Yet, every day was a struggle against exhaustion.

Even as a teenager, it was evident that something was wrong, though how could I have deciphered the puzzle of my own body at such a tender age?

My quest for answers began early, barely at the age of 16, when I sought medical intervention for my erratic bleeding patterns. I was prescribed a contraceptive pill under the assumption that this would “balance my hormones”. When the pill only aggravated my symptoms, I was switched to another, commencing an arduous cycle – one filled with different pills, injections, and even more medications aimed at countering the side effects of their predecessors. For years, I conveyed the worsening of my condition to healthcare professionals, who, in turn, treated me as an uninformed patient, pressuring me to persist.

I was left in a confused bunch of tatters, both mentally and physically.

Challenges in Diagnosis and Treatment:

It was disheartening, to say the least. Years upon years of doctors and specialists dismissing my concerns, telling me it was "just period pain," that I was "overly sensitive," and even suggesting that having a baby would cure me. They prescribed more pills, chastised me for not taking them as directed, fobbed me off, and, at times, treated me like I was making it all up. The constant struggle left me second-guessing myself, sometimes wondering whether what I was experiencing was really that bad, until the next flare up where I would be sleeping on the cold floor in the bathroom, vomiting into the toilet bowl feeling like I had flaming hot barbed wire wrapped around my body, unable to feel my leg through the unimaginable nerve pain, it was in those dark, breathless cold nights that I chose to be a fighter and refused to give up on myself.

If only there was more awareness about endometriosis, maybe I wouldn't have suffered for so long. I often tried to hide what I was going through from those around me & how bad the pain I was experiencing really was on account of fear of being perceived as a hypochondriac, I feared sounding like a complainer. I couldn't adequately convey just how bad it was, and I had no explanation for what I was experiencing. If no health care professionals could take me seriously, how could anyone else possibly believe or understand me?

Understanding Endometriosis:

Endometriosis is a condition that affects 10% of women worldwide. It occurs when tissue similar to the lining of the uterus (endometrium) grows outside of the uterus, causing a range of symptoms. These symptoms can include:

·      Back pain

·      Leg/foot pain

·      Referred nerve pain

·      Central pain sensitisation

·      Chronic pelvic pain

·      Sex pain (during and after intercourse)

·      Bloating

·      Nausea/vomiting

·      Depression/Anxiety

·      Painful bowel movements – Diarrhoea/constipation

·      Painful or urgent urination

·      Heavy and irregular painful menstruation

·      Fatigue

·      Digestive issues

·      Infertility

The Prevalence of Endometriosis:

Endometriosis affects approximately 10% of women of reproductive age, however it is an often-underdiagnosed condition. The lack of awareness and understanding of endometriosis in the medical community can lead to delays in diagnosis, or misdiagnosis as was the case with my journey.

I’ve missed countless social outings, birthdays, activities, and events; I’ve lived in constant fear of making plans because I never knew when the next flare-up would strike. I’ve used constant excuses of being “sick” or “tired from working long hours” as that was a lot easier to explain than what was really going on.

I felt helpless, I couldn’t understand what was wrong with my body or why I had constant fatigue, I was anxious about the future, and perpetually second-guessed myself. But every time a flare-up took over, I knew I had to keep fighting. It takes an immense toll when you're gaslighted and ignored by both the medical system and society.

Exploring Alternative Therapies:

I tried everything under the sun in my quest for relief from the symptoms —Acupuncture, Naturopathy, Myotherapy, Cupping, Dry Needling, Chiropractic Care, Physiotherapy, various diets, Personal Trainers, tens machines, essential oils, heat therapy, cycle syncing, different types of exercise, and I saw multiple different gynaecologists.

Throughout those years, there were no moments of hope or breakthroughs. Even when I began to suspect endometriosis and suggested it to healthcare providers, they brushed off my concerns because all my ultrasounds over the years had come back clear. They said it couldn't be endometriosis. What I didn’t know, and what the healthcare system seemingly lacks education on, is that 70% of Endometriosis cases are unable to be diagnosed via ultrasound or MRI and can only be diagnosed via laparoscopic surgery.

Early diagnosis and treatment of endometriosis are crucial for improving the quality of life for those of us who are affected. On average, it takes about 7 to 10 years for a person to receive an accurate diagnosis of endometriosis, highlighting the need for greater awareness and understanding.

Rebirth Through the Storm: A Defining Moment

In January 2023, earlier this year, I was back home in New Zealand for a month-long holiday. The journey had been refreshing, reconnecting with friends and family in my hometown, and I was eagerly anticipating reuniting with loved ones for a birthday down south. After living overseas for five years, I had missed out on numerous birthdays and special events, so this homecoming was particularly special.

The day I was supposed to set out on my six-hour road trip down south, the sun's early rays welcomed me as I embarked on a beautiful morning walk to the centre of New Zealand. The crisp air invigorating me, and I couldn't resist stopping at a favourite local coffee shop to savour a rejuvenating juice and a cup of hot coffee. The nearby Tahuna beach beckoned, offering an opportunity for a soul-soothing final sunrise swim before my departure.

Life felt wonderfully normal, and for a fleeting moment, it was just that. Then, as I stood under the cascading water in the shower of my best friend’s apartment, something shifted dramatically. One second, I was carrying on with my day, and the next, I found myself crumpled on the floor, the searing pain consuming every fibre of my being.

My right leg went numb, a sensation I had tragically grown accustomed to over the years. Simultaneously, an excruciating, searing pain in my right lumbar sacral region felt as if someone had ignited a fire and thrust a relentless knife into my hip joint, the knife twisting back and forth with cruel persistence. I crawled out of the shower, and for hours, I lay there, drenched in sweat, so hot, but also so cold, unable to move, unable to escape the relentless torment.

The realization that I was missing a loved one's birthday, coupled with once again the inability to explain the inexplicable agony I was enduring, left me in a state of despair. I yearned to simply carry on about my life, but the pain had reduced me to immobility once again. I can’t even say whether this was the lowest ebb in my arduous journey, or if it was just yet another moment of profound despair.

But in the depths of that despair, while I lay on the floor quietly sobbing, something within me stirred. I was determined not to yield, to keep pushing, searching, and seeking answers. I made a solemn promise to myself that I would get the answers I was searching for,  it was way past time.

I had now been living in Melbourne for 6 years, working harder than I ever had before, diligently saving and not living a lavish lifestyle. I was acutely aware that the journey I was embarking upon was not just emotionally taxing but also financially costly. However, the promise I made to myself was unwavering. Answers held more value to me than any amount of money ever could. I would have sacrificed every last cent to finally understand why my body felt so broken.

After fifteen long years of pain, uncertainty, and the relentless quest for answers, a glimmer of hope materialized. I made my mind up, I was going to search for a specialist in the field of endometriosis and chronic pelvic pain, someone with a niche.

Walking into that first consultation, I was armed with a thesis-like self-written explanation, detailing every symptom I experience and precisely when I experience it. I anxiously fidgeted in the chair and rattled off my list of symptoms, expecting the all-too-familiar scepticism I had encountered in the past. However, the response that followed was nothing short of miraculous.

The specialist turned to me and remarked something along the lines of, "You came in here armed with such conviction, listing your symptoms because you thought I wouldn't believe you?" I met his eyes, dumbfounded, uncertain of the path ahead.

But then he fixed his gaze on me, and uttered those three words I so desperately needed: "I believe you."

For the first time in fifteen years, someone was there to help me, not dismiss me.

Not only did he believe me, but he also refrained from prescribing more pills or hormonal contraception, avoiding vague explanations. He provided a clear path forward, emphasizing that laparoscopic surgery was the only means to unveil the mystery shrouding my condition.

The experience from that moment through to the surgery itself was everything I had yearned for and dreamed of.

Now, I stand on the other side of a life-altering laparoscopic surgery that included the excision of a pelvis full of endometriosis. Waking up after the surgery, I was enveloped in pain, disoriented, and uncertain about the procedure's success. Yet, I had an unshakable sense that my life was about to improve.

A few hours later, my surgeon, my knight in scrubs, stood by my hospital bed. With unwavering certainty, he informed me that I wasn't going home the next day. The surgery had been an extensive 2.5-hour ordeal, involving the removal of substantial quantities of rock-hard scar tissue and endometriosis from my pelvis.

I would be very sore, and the first step in the road to recovery meant spending a couple of nights in the hospital under close monitoring. This was the rebirth, the transformation, and the beginning of a new chapter in my life. I was absolutely high on relief, I’d been cut open, stitched up, I was bruised, sore and doped up on pain killers with a drain tube and a catheter but I was so god damn relieved, the world was no longer sitting on my shoulders.

A New Beginning: Post-Surgery Reflections

As I write this, I’m on day three post-surgery, I am still in a lot of pain, I’m still a bit dopey from the pain meds, I haven’t yet had a chance to experience the benefits post-surgery but I'm more determined than ever to share my journey. I want to raise awareness about endometriosis and offer support to anyone suffering or struggling to get answers and make sense of what is happening in their body.

I want to help women get answers sooner and provide insight to their loved ones so that together, we can support each other and minimize the suffering caused by endometriosis. I know there is no cure, and that’s ok, now I have answers as to what and why. I’ve had surgery which I hope will minimize the pain, and maybe I’ll need more surgeries in the future but I also now I have the resources that can help me understand and manage the other symptoms that aren’t helped by surgery.

A Call for Change: Together, We Can Break the Silence

Through this continuing journey, I've learned the incredible importance of self-awareness when it comes to our bodies. We must be in tune with our own bodies, understand their functions, and listen when they're telling us that something is wrong. It's also okay to question your healthcare professionals when their guidance doesn't feel right. Healthcare is a wonderful thing, and I couldn't have had surgery without it, but it shouldn't have taken 15 years to get to this point.

My hope is that my story can offer solace, support, and hope to others dealing with endometriosis. Together, we can make a difference, spread awareness and be part of the change.

I am a warrior xx