Unmasking the Silent Struggle – Why Endometriosis is Still Ignored & Misunderstood

Advocacy is empathy, compassion and community at work. — Janna Cachola

Imagine living with excruciating pain, month after month, year after year, only to be told that it’s "just bad periods." Imagine doctor after doctor dismissing your agony, prescribing painkillers, or worse—telling you it’s all in your head. Imagine feeling like your body is betraying you while the medical system shrugs its shoulders.

For millions of people living with endometriosis, this isn’t just a hypothetical—it’s their reality.

March is here, and that means Endometriosis Awareness Month—an opportunity for us, Endo Warriors, to be even louder, bolder, and more relentless in our advocacy.

For too long, endometriosis has been misunderstood, dismissed, and overlooked. But this month, we take up space, we share our stories, and we demand the recognition, research, and resources we deserve.

Throughout March, I’ll be sharing weekly blog posts, insightful conversations, and powerful discussions on all things endometriosis. Whether you're battling this disease yourself, supporting a loved one, or just wanting to learn more, this is your chance to be part of a movement that amplifies our voices and drives change.

Despite affecting an estimated 200 million people worldwide and approximately 1 in 10 women of reproductive age, endometriosis remains one of the most misunderstood, misdiagnosed, and under-researched conditions in modern medicine. And for those of us in South Africa and across Africa, the challenges are even greater.

So why is endometriosis still such a mystery? Why are so many of us forced to fight for recognition, for diagnosis, for treatment? Let’s break it down.

The Gender Pain Gap – When Women’s Pain is Dismissed

We need to talk about medical gaslighting.

For centuries, women’s pain has been minimised, ignored, or outright dismissed. From the days of “hysteria” diagnoses to today’s rushed doctor visits, the healthcare system has a deep-rooted bias in how it treats female pain.

A study published in the Journal of Pain Research found that women wait longer in emergency rooms for pain treatment than men. Another study in the UK revealed that doctors take women’s symptoms less seriously, often attributing them to anxiety or stress rather than real medical conditions.

This is why so many women with endometriosis spend an average of 7-10 years searching for a diagnosis. In South Africa, that number is likely higher.

Here’s the reality: If endometriosis affected men at the same rate it affects women, we would probably have better diagnostic tools, faster treatments, and more funding for research.

Instead, we’re stuck explaining ourselves over and over again to doctors who still don’t fully understand this disease.

The Economic Burden – The Cost of Being Chronically Ill

Living with endometriosis is expensive, period.

Not only does it cost us our time, energy, and mental well-being, but it also comes with a financial burden that is often overlooked.

For the individual warrior, endo costs include:

• Countless doctor visits, surgeries, and medications.

• Unpaid sick leave and missed workdays.

• Fertility treatments for those struggling to conceive.

• Expensive holistic treatments (because sometimes, conventional medicine doesn’t cut it).

In Africa, access to specialised care is often limited. In South Africa, few public hospitals offer advanced endometriosis treatment, forcing many to turn to private healthcare—which is unaffordable for most.

For those in rural areas, the situation is even worse. Many women live their entire lives without ever being diagnosed, suffering in silence because endometriosis is still widely misunderstood, even within the medical community.

Living with endometriosis isn’t just physically exhausting—it’s financially draining too. Every month, I have to see multiple medical practitioners, refill prescriptions, manage flare-ups, and often make emergency room visits when the pain becomes unbearable. Anti-inflammatory injections, therapy, physiotherapy, specialist consultations—the list goes on.

And the hardest part? Medical aid barely covers it. Some months, it feels like I'm just working to pay for the cost of surviving. Even when medical aid does contribute, it’s usually just a fraction of what I need—and the rest? It comes out of my pocket.

There have been moments where I’ve had to choose between paying for essential treatment or covering other basic needs. The financial toll of a chronic illness like endometriosis is rarely talked about, yet it’s one of the biggest battles we face. How do we afford to be sick when healthcare is a luxury, not a right?

The Emotional & Mental Toll of Endometriosis – Not Being Believed

One of the hardest parts of living with endometriosis isn’t just the physical pain—it’s the invalidation.

• The eye-rolls from doctors.

• The “just take a Panado” responses from colleagues.

• The guilt of missing family events, social gatherings, or work commitments.

• The isolation of feeling like no one truly understands.

Endometriosis doesn’t just affect the body—it takes a serious toll on mental health. Studies show that people with chronic pain conditions, including endo, are more likely to suffer from depression and anxiety. I'm one of those people. I have battled depression and anxiety for years, but since being diagnosed with endometriosis, these struggles have intensified in ways I never expected. The weight of this illness isn’t just physical—it seeps into every part of my life.

Some days, I feel like I’m barely keeping it together. Juggling work, relationships, family, friendships, advocacy, self-care, and the rest my body so desperately needs—it all becomes too much. And the heaviest weight of all? Not being believed.

It only takes one person to dismiss my pain, to tell me it’s "just bad cramps," or to suggest I should "just push through it"—and suddenly, the emotional burden triples. The frustration. The helplessness. The loneliness. It’s overwhelming.

That’s why I prioritise my mental health just as much as my physical health. I take medication, I see a psychologist, and I no longer see seeking help as a sign of weakness—because it’s not. It’s survival.

To anyone struggling with the emotional toll of a chronic illness: You don’t have to do this alone. Therapy, support groups, medication, leaning on loved ones—it all matters. Your pain is real. Your struggle is valid. And you deserve support.

Beyond Awareness – We Need Action

Awareness is great, but it’s not enough.

We need:

• Better education for doctors, nurses, and even teachers, so young girls aren’t dismissed from an early age.

• Policy changes to ensure that endometriosis is covered by public healthcare systems.

• More funding for research because, let’s be real—if we can develop a COVID-19 vaccine in record time, we should be able to invest in better treatments for endometriosis.

• Cultural shifts to challenge the belief that women’s pain is normal and should be endured in silence.

Endometriosis isn’t just a women’s health issue—it’s a global health crisis.

If you’ve ever been dismissed, misdiagnosed, or had to fight to be heard, I want to hear from you. Your voice matters. Our stories matter. The more we speak up, the more pressure we put on the system to change.

It’s time to stop ignoring the silent struggle. We deserve better.

Let’s keep the conversation going.

Love and light,

Hlengz - The African Endo Warrior

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