Marina Kyriakou: From patient to pioneer in the fight against endometriosis

“I ever accidental that I was the guinea pig, a portion of the mislaid generations of women experimented on, who suffered with endometriosis successful silence.”

Marina Kyriakou, Founder and Chair of the Fight ENDO Foundation, told Neos Kosmos astir the decades of symptom she endured, the surgeries she underwent, and the toll connected her fertility, earlier yet receiving a diagnosis, much than twenty years later.

“It was too precocious for me. And highly hurtful that I couldn’t person kids. But the champion happening I tin bash now, arsenic agelong arsenic I’m here, is advocator for women for caller policies, and make systemic alteration astir the interaction of endometriosis connected women’s wellness and regular life.”

For implicit two decades, Kyriakou worked successful healthcare leadership. Yet her astir defining section began with her ain diagnosis. “After surviving with debilitating symptoms since the property of 16, I was yet diagnosed with stage IV endometriosis astatine 40. That journey, marked by pain, disorder and dismissal, ignited a mission. I founded Fight ENDO Foundation & Adenomyosis Australia to guarantee nary woman feels invisible, unheard oregon alone.”

Since then, hundreds of women person recovered clarity, proposal and comfortableness done the instauration arsenic they navigate their ain journeys with endometriosis.

“Our ngo is to stop women suffering. We absorption connected three pillars: advocacy, acquisition and support. We work to trim diagnostic delays, amended entree to attraction and rise consciousness crossed society. We besides collaborate with Adenomyosis Australia, whose work has been instrumental successful bringing visibility to this often-overlooked condition. Together, we’re gathering a united beforehand for women’s health.”

The soundlessness astir pain

An estimated 1 successful 7 girls and women unrecorded with endometriosis, a chronic information where insubstantial akin to the lining of the uterus grows extracurricular the uterus, causing inflammation and pain.

And though consciousness has grown, Kyriakou says stigma still surrounds the symptom women acquisition successful workplaces, schools, and communities.

“In galore cultures, including the Greek community, women’s symptom is spiritualised, hidden, oregon endured quietly. There’s stigma astir reproductive health, and that soundlessness tin beryllium profoundly harmful.”

Growing up successful a Greek family, she didn’t speak astir her suffering. “That’s something you don’t discuss, due to the fact that it is considered your backstage business. I survived by pushing done and adapting to it. Like so galore women, I normalised the symptom and learned to relation while successful distress. It wasn’t resilience. It was survival. And it came astatine a cost.”

“Like so galore women, I normalised the symptom and learned to relation while successful distress. It wasn’t resilience. It was survival. And it came astatine a cost.” Photo: Pexels

In those days, achy periods were brushed disconnected arsenic “just portion of being a woman.” She was told “It’s hormonal”, “You’re too young”, “Try the pill”, and fixed band-aid solutions, without existent investigation.

Friends, household and adjacent doctors didn’t question it. “That deficiency of consciousness is portion of the systemic contented we are warring today.”

Even today, women wait 7 to 10 years connected mean for a diagnosis. “That hold is unacceptable and preventable,” she says, pointing to GP training gaps, dismissal of symptoms, and deficiency of specialist access, each of which tin crush a woman’s imagination of having a family.

Fighting for change

There has been progress, she acknowledges. “Public campaigns and courageous voices person helped. But we request argumentation reform, aesculapian training and taste change, not conscionable sympathy.”

Since starting the instauration successful 2019, she has heard from countless women frustrated aft being dismissed by their doctors. “Through our network, we’ve connected them with specialists, helped them unafraid a due diagnosis, and supported them connected their fertility journeys.”

“I’m not a doctor. I’m conscionable a woman who’s had a terrible lived acquisition with this disease. But the astir rewarding portion of my work has been creating these connections, and helping women take power earlier the illness takes implicit their lives.”

One of the foundation’s proudest achievements has been the motorboat of the Rural Reach Initiative, which delivers education, support, and attraction to women successful distant and underserved regions of Australia.

It each began when the instauration received a connection from Tanya, a young woman successful a small outback town who had been suffering successful soundlessness for implicit a decade, with nary entree to specialists and small cognition of endometriosis.

“Through Rural Reach, Fight ENDO mobilised trained nurses and educators to visit determination communities, big workshops, and supply nonstop support. Tanya was 1 of the archetypal to benefit. She yet received a diagnosis, began treatment, and aboriginal joined the Foundation arsenic a assemblage member.”

Since its launch, the inaugural has reached implicit 2,000 women crossed agrarian Australia, trained implicit 50 section wellness workers, and helped trim delays successful diagnosis by up to three years successful targeted regions. Tanya present leads monthly support circles successful her town, offering anticipation and guidance to others who erstwhile felt alone.

Looking ahead

Kyriakou is optimistic astir systemic reform. She awaits the findings of the Victorian Government’s archetypal enquiry into women’s pain, launched past year, hoping it will pb to lasting change.

“We anticipation for mandatory menstrual wellness acquisition successful schools, specialist training for GPs and frontline workers, workplace protections for women with chronic pain, and accrued probe backing into endometriosis and adenomyosis.”

She besides stresses the request for applicable measures: flexible work arrangements, menstrual permission policies, symptom absorption and intelligence wellness support, and firm acquisition programs to foster empathy and inclusion.

Next year, Fight ENDO will rotation retired a nationalist acquisition initiative, delivering tailored workshops successful schools and workplaces, to teach students and employees to recognise symptoms, support affected individuals, and dismantle stigma,” Kyriakou says.

There is not capable acquisition for young girls astir what symptom is not normal.

“Girls merit to cognize their bodies and understand that symptom is simply a signal, not a punishment. Early acquisition tin pb to aboriginal involution and amended outcomes. Endometriosis and adenomyosis tin interaction fertility, yet galore women larn this too late.”