Invisible Battles: Living with Endometriosis

an effort to destigmatise pain

I am writing this while scanning my body, searching for places that feel calm, as my lower body is wracked with pain. I am menstruating - a statement I didn’t expect to open this article. Yet, as I write, a battle rages inside that is invisible to those around me.

In a few weeks, I will undergo my second surgery in eighteen months in an attempt to relieve endometriosis. This systemic condition affects one in ten women¹ globally, although I suspect the true figure is higher, based on the number of women who I know with it.

Right now, it feels as though violent, malevolent forces are attacking me from within. Late last night, I realised I’d run out of painkillers. “It won’t be that bad”, I told myself, knowing full well I was lying. By 3 a.m., it felt like an army - imagine the terracotta warriors - were marching to battle in unison. This is how my menstruation begins every month: the rumblings of contractions to come followed by all-out, body-paralysis, cold-sweat-inducing war. I screamed into my pillow, paralysed by the pain. This happens for three to four days, every month.

Yet still, I rise.

The alarm goes off. I get up, get ready, and head into the world. What choice do I have? Endometriosis is often referred to as “the missed disease”² because so little is known about it and it is underdiagnosed. I call into the pharmacy, and get over-the-counter painkillers, as it never dawned on me or my consultant that I could do with something stronger.

What I’ve learned about endo, is that it can begin with just painful periods. How many of us have been told that it’s just a period? As it progresses, and I have Deep Infiltrating Endometriosis (D.I.E. - awful official acronym), it has consumed more and more of my life. It’s not just the menstruation. I live with this daily, it strikes unexpectedly, I can be having coffee with a friend and be overtaken with a painful, indiscriminate flare and all I can do is wait it out. Or in a grocery aisle, where all I can do is hold onto a shelf, feign interest in the back of a cereal box, and hope to hold it together in front of other shoppers.

I cancel many plans at the last minute as I get floored by the pain, exhaustion and a nervous system that goes into red alert and needs a lot of time to be brought back down. The pain always subsides, the exhaustion always stays until I go to bed, relics of another battle I was forced to partake in.

And with all of this, I am one of the lucky ones. I found a consultant, I got a cancellation, he moved quickly, and I have a date for surgery. Most wait years.

It’s been a steep learning curve. The first surgery wasn’t a success, and I learned from others with this disease that I had to take on the role of researcher and advocate. I know more about the inner workings of my body than I want to know. A subject forced upon me that I could now get a high grade in.

What haunts me most, is the absence of a known cure or the actual root cause. How can a disease affecting so many, have no cure? I’ve been told to approach this as an auto-immune condition - reduce inflammation, reduce stress, reduce, reduce, reduce.

I’ve spent a small fortune on supplements and therapies not covered by insurance - again, a privilege many can’t afford or access. I try to be optimistic but after last night’s battle, I find myself asking - are any of them working?

In January 2024, the Mckinsey Health Institute and World Economic Forum released a report, Closing the Women’s Health Gap: A $1 trillion opportunity to improve lives and economies³. Its findings were stark but unsurprising. Women often don’t receive gender-specific care, leading to disparities in treatment and outcomes. Science has historically centred on male physiology, assuming few differences beyond reproduction.

The report cites endometriosis as a glaring example of gender bias. It describes the condition, which affects 1 in 10 women globally, as debilitating and frequently misdiagnosed as IBS. Diagnosis delays, invasive procedures, and normalised pain perpetuate needless suffering. Improved diagnostic methods and increased funding are urgently needed. Misdiagnosis also skews research priorities: adenomyosis, a co-morbid condition that I also have, receives minimal attention despite its growing prevalence.

In 2020, just 1% of healthcare research funding addressed female-specific conditions beyond cancer⁴. Yet, for every $1 invested in women’s health, the economic return is estimated at $3. Better health leads to increased productivity, fewer sick days, and lower healthcare costs. By investing in women’s health, the report states that societies and economies can see greater returns in terms of overall economic growth. I’m not here to push a productivity agenda; rather, I believe the mental health benefits would be worth so much more than this.

Another study released in August 2024⁵ revealed that women are less likely than men to have their pain assessed in hospitals, and wait longer for treatment due to entrenched biases. As the study’s co-author, Alex Gileles-Hillel, noted, “Women are viewed as exaggerating or hysterical and men are viewed as more stoic when they complain of pain.”⁶

Right now, endometriosis cannot be cured, a reality I had a hard time accepting. The best-case scenario is the symptoms will reduce significantly, and they may not change.

But I have hope - not so much in the system, but in the possibility that girls of today won’t endure this when they reach my age.

1. I recognise the importance of healthcare for all gender identities and acknowledge that not all who identify as women were born female. This discussion spans all gender and sex identities and affects anyone who can be affected by endometriosis. Please note that I am not a healthcare expert, nothing here should be taken as medical advice.

2. https://pmc.ncbi.nlm.nih.gov/articles/PMC8517707/

3. https://www.mckinsey.com/mhi/our-insights/closing-the-womens-health-gap-a-1-trillion-dollar-opportunity-to-improve-lives-and-economies

4. https://www.mckinsey.com/industries/healthcare/our-insights/unlocking-opportunities-in-womens-healthcare

5. https://heart.bmj.com/content/110/22/e4

6. https://www.nature.com/articles/d41586-024-02547-7