The True Cost of Endometriosis: The Financial, Physical, and Emotional Price We Pay

The truth is, in order to get things like universal health care and a revamped education system, then someone is going to have to give up a piece of their pie so that someone else can have more. — Michelle Obama

Living with endometriosis is expensive. And I don’t just mean emotionally or physically — I mean cold, hard cash. Rands. Pula, Emalangeni. Cedis. Nairas. Pounds. Dollars. Whatever your currency, it adds up faster than you can say “referral letter.”

From the outside, people might see a woman who looks like she has it together — showing up to meetings, smiling through the pain, getting things done. But behind the scenes? It’s a carefully balanced dance between pain meds, specialist consultations, medical aids (if you’re lucky), surgery bills, and a growing stash of heating pads and herbal teas that are basically a line item in the monthly budget at this point. There’s the planned costs — the follow-up appointments, the prescriptions — and then there are the surprise ones, like waking up in the middle of a flare and needing an emergency consult that your health insurance doesn’t fully cover. Or having to cancel work at the last minute, again, and lose out on income — again.

Over the years, I’ve come to understand that this illness doesn’t just steal your energy or hijack your dreams. It quietly drains your bank account too, often in ways that people don’t even realise. Endometriosis is one of those chronic conditions where the cost isn’t always visible — because much of the pain is hidden, and much of the care is out of pocket.

Let’s talk about it.

Here are 5 of the biggest costs that come with being chronically ill with endo — costs that don’t make headlines, but absolutely shape our lives, or at least my life:

1. Medical Costs (That Never Seem to End)

Managing endometriosis comes with a hefty financial cost — one that never really gives you a break. It’s not just about one or two big expenses. It’s the constant accumulation of small, medium, and large medical bills that add up over time, month after month, year after year.

I’m one of the “fortunate” ones. I have medical aid. But even that is nowhere near enough to carry the weight of what it actually takes to manage this disease. Between the monthly medication, physio appointments, the constant blood tests, regular specialist appointments, scans, ultrasounds, and check-ins with my gynaecologist, my annual medical savings are often finished by the end of the first quarter. By March, I’m already swiping my card for everything that comes next. And trust me, there’s always more that comes next.

A lot of the specialists I need to see either don't take medical aid or don’t charge medical aid rates, which means that even when my medical aid does cover part of the bill, I’m left having to make up the difference. Medication? It’s a game of chance. If it’s not coming from my medical savings, it’s not covered at all. And even when I was lucky enough to get my medical aid to approve cover for my monthly Visanne — a hormone treatment that helps manage endometriosis symptoms — the relief was short-lived. The current cost of Visanne is around R500 for a box of 28 tablets. Medical aid cover? A mere R100. It’s sad, really. Thank goodness for generic options, because otherwise, I’d have no choice but to go without.

Yes, I could try to get care through the public healthcare system. But that comes with its own heavy cost — a different kind of exhaustion. Long queues, extended wait times, delayed treatment plans, harsher attitudes from overworked staff. It’s not always easy to access specialised gynaecological care in a government hospital, especially if you’re not based in a major city. And even if I were willing to go through that route, the number of days I’d have to take off work for appointments and follow-ups would trigger even more stress — emotionally and professionally. Chronic illness doesn’t wait for your leave days to reset.

If I had to go to the ER tonight? That’s on me. Out of pocket. And so, I play a familiar game — asking myself 21 questions before even thinking about heading to the hospital. Is the pain bad enough? Could it be something else? Do I really need help, or can I just sleep it off? What if they do nothing and I waste the money? The same exhausting mental checklist applies before I request a sick day at work. Am I sick enough? Can I push through? Will people think I’m slacking?

It all starts to feel like punishment. Like I’m paying — literally and figuratively — for something I never signed up for.

2. Unpaid Sick Leave and Missed Workdays

One of the silent and most overlooked costs of endometriosis is time — time away from work, time away from life, and time spent trying to get better just so you can keep functioning. But when you live with a chronic illness, “functioning” often comes at a personal cost.

In my case, I used up my entire three-year allocation of 30 days sick leave in just one year. That’s how quickly endo can eat away at your sick days. Between flare-ups, surgeries, hospital visits, and recovery periods, those 30 days didn’t stand a chance. And once those days were gone, I had no choice but to dip into my annual leave just to manage being unwell.

That’s when it really started to take a toll on me.

I wasn’t taking time off to rest or recharge — I was taking leave just to survive. A day here to recover from a bad flare, two days there for a painful scan or post-op fatigue. It was never a proper break. It became a cycle of survival leave — never resting, always recovering. And the exhaustion? It became unbearable. I was permanently depleted, emotionally and physically burnt out from never truly getting the rest I needed.

The reality is, surgery and recovery alone can wipe out your leave bank, let alone the everyday management of symptoms. For endo warriors like me, 30 days every three years is barely a scratch on the surface of what’s needed. Sometimes, I found myself daydreaming about how helpful it would be if there was a system where healthier colleagues could donate some of their unused sick days to those of us constantly in the trenches. Imagine that kind of solidarity.

Eventually, after months of trying to hold it all together, I made a very difficult decision — I applied for a medical sabbatical. I had hit a wall. My body was screaming for help, and there was nothing left in the tank. It wasn’t a decision I took lightly, especially knowing that I wouldn’t be paid for that time off. But it was necessary. I needed that time to breathe, to rest, and to start healing properly.

Choosing rest over a paycheque is not an easy thing — especially when the world is always demanding more from you. But self-care is not optional when you live with endometriosis. Skipping rest only delays the inevitable crash. And when that crash comes, it costs you more than just money. It costs your peace, your energy, and often your ability to show up as your full self — at work, in life, in everything.

Taking that break was a lifeline. Because without it, I don’t know where I’d be today.

3. Alternative and Holistic Treatments

When conventional medicine doesn’t give you full relief — and let’s be honest, for many of us with endometriosis, it often doesn’t — you start exploring every alternative and holistic option out there. You become your own researcher, your own experiment, trying to piece together anything that might help ease the pain or make life a little more manageable. Many of us then turn to complementary treatments: acupuncture, pelvic physiotherapy, supplements, clean eating, IV infusions, massage therapy, herbal teas, and more. But here’s the catch: none of these options are cheap.

For example, I’ve turned to castor oil packs as one of my go-to natural relief tools. They’ve been an absolute game-changer in helping with abdominal pain and inflammation. But I quickly learned that not all castor oil is created equal — the good stuff, the cold-pressed, hexane-free variety, can be pricey. Still, I choose to invest in it, because I’ve seen the difference. It’s one of those natural options that, while not a miracle, offers gentle, consistent relief. And when you live with daily pain, that matters.

Then there are the supplements. Oh, the supplements. The ones that actually work — magnesium, omega-3s, CoQ10, curcumin, and the like — aren’t cheap, especially when you’re taking them consistently, month after month. And it’s not like you can pick the cheapest brand off the shelf. Quality matters. It’s another layer of expense that often goes unspoken.

And of course, let’s talk about food — specifically, clean eating and the anti-inflammatory diet. For many endo warriors, including myself, cutting down on sugar, dairy, gluten, and processed foods has a huge impact on how we feel. There’s no denying that eating clean helps reduce bloating, flare-ups, and inflammation. But it’s not lost on me how unaffordable clean eating can be. Fresh, whole, organic foods cost significantly more than processed, packaged options — and when you’re already juggling medical bills, supplements, and time off work, your grocery bill can feel like a luxury expense.

Still, these are the sacrifices I make, and I know I’m not alone. Because for many of us, these aren’t wellness trends — they’re survival tactics. They’re part of how we claw back some sense of control, some measure of relief, some version of sanity. And while they do add up financially, the payoff — fewer flares, better sleep, less inflammation — is often worth it.

But let’s not pretend it’s easy. None of this is. And it’s time we acknowledged that these hidden costs — the oils, the diets, the supplements — are part of the economic burden of living with a chronic illness like endometriosis.

4. Fertility Costs (For Those Struggling to Conceive)

Endometriosis is one of the leading causes of infertility — a fact that many people don’t realise until they’re deep into the trenches of trying to conceive. For those of us who dream of one day becoming parents, this reality can feel like a gut punch. The emotional toll? Unimaginable. But let’s also talk about the financial cost, because it’s huge.

IVF (In vitro fertilisation).

IUI (Intrauterine insemination).

Egg freezing.

Hormonal therapies.

Endless consultations.

Specialist scans.

These are all things that become part of your vocabulary when you're navigating fertility challenges with endo. And none of them come cheap. One round of IVF in South Africa, for example, can easily cost between R70,000 to R100,000 — and that doesn’t guarantee success. Most people need multiple rounds. Most medical aids don’t cover it. And for many, it’s simply out of reach.

Even fertility consultations and hormonal support — the first steps before you even begin treatment — are financially draining. It feels like the minute you mention “endometriosis” and “trying to conceive” in the same sentence, the bills start stacking up.

In South Africa, access to fertility support through public healthcare is extremely limited. Resources are stretched, waiting lists are long, and specialised reproductive care is rarely available. So if you want timely and comprehensive fertility treatment, you almost always have to go the private route — which, again, most people can’t afford. It creates a heartbreaking reality: your ability to start a family is often tied to your income.

And then there’s the emotional cost of being told to “just relax” or “give it time” when deep down you know that this disease is quietly, relentlessly interfering with your chances — and there’s a price tag attached to every intervention.

So yes, the cost of infertility with endometriosis isn’t just about money. It’s about dreams delayed, choices limited, and the deep grief that comes with knowing that something so natural for others may come at such an enormous price — financially, physically, and emotionally — for you.

5. The Cost of Not Being Believed

This one? This one cuts the deepest.

Because the cost of endometriosis isn’t just financial — it’s emotional, mental, and at times, deeply spiritual. One of the most painful prices many of us pay is the cost of not being believed.

It starts in the doctor’s room — where you're told it’s “just bad periods” or that “you’re too young” to have anything serious going on. You go in desperate for answers, and you leave questioning your sanity. The pain is real, but your voice is treated like an exaggeration. Then it follows you into the workplace — where sick days become “suspicious” and flexibility becomes something you have to earn by overcompensating. You end up having to prove your pain, perform your productivity, and protect your job — all at the same time.

And at home? Sometimes the disbelief continues. Friends who don’t understand. Family members who think you’re just being dramatic. Loved ones who mean well, but unknowingly invalidate your experience with comments like, “At least it’s not cancer.”

The toll of constantly having to justify your illness is one that can’t be easily measured in rands, dollars or pounds. You pay with your mental health, your self-esteem, and your sense of safety in the world. You pay by suppressing your truth just to be seen as "reliable," "likable," or "low-maintenance." You pay with silence.

And for those in rural or underserved communities — across South Africa and the African continent — the disbelief is even more tragic. Many women live their entire lives without a proper diagnosis, suffering in silence. There simply isn’t enough access to specialists, and often, there isn’t even the vocabulary in local languages to explain what endometriosis is, let alone advocate for proper treatment. The system fails them before it even begins to understand them.

So yes — the cost of endometriosis is about more than money. It’s about the weight of invisibility. It’s about what it takes to be heard, to be taken seriously, and to get the care you deserve.

And honestly? That shouldn’t be something anyone has to fight for.

And as if the personal cost of living with endometriosis wasn’t enough, let’s talk about the bigger picture — the healthcare system that simply wasn’t built for people like us.

The above quote by Michelle Obama that I’ve come back to more than once on this journey reminds me that when we talk about equitable access to healthcare — whether for endo warriors, diabetics, people with disabilities, or anyone managing a lifelong condition — we are also talking about privilege. About whose pain gets taken seriously. About whose medical needs are covered. About who can afford to get help — and who can’t.

Michelle Obama’s words remind us that real change doesn’t happen unless we’re willing to reimagine the system — and share the “pie” more fairly. Healthcare, at its core, should not be a luxury. And yet, here we are, rationing meds, skipping appointments, crowdfunding surgeries, and calculating whether we can afford to get better.

This is not just about me as an endo warrior — this is about all of us who’ve ever felt the weight of the bill before the relief of treatment. It's about making space for policy that prioritises people over profit, and a healthcare system that doesn’t leave the chronically ill behind.

Living with endometriosis is hard enough without having to go broke trying to manage it. That’s why I speak up. Not just for me, but for every warrior who’s had to choose between painkillers and groceries. For every young girl who’s told “period pain is normal” while she silently suffers with such a horrendous disease. For every woman who’s been gaslit into believing it’s all in her head.

Endo isn’t just a women’s issue. It’s an economic one. A social one. A healthcare crisis hiding in plain sight.

So on the days when I’m tired — truly tired — of fighting for awareness, I remind myself of this: someone, somewhere, is just starting their journey. And maybe they’ll find my words. Maybe they’ll feel less alone. And maybe they’ll get help sooner, not later.

Because the true cost of endometriosis shouldn’t be silence — because staying silent has never been an option.

Love and light,

Hlengz - The African Endo Warrior

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