Let's Talk | Endometriosis: An unclear path to an unclear future

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Bridging the gap: Young people in our region are feeling left out, Caitlyn Grant and Megan Fisher are opening the conversation with their new weekly column, Let’s Talk. Covering all things from mental health to successful business stories of those in their early twenties, we want to hear from you! If you or someone you know has a story, contact or

As Endometriosis Awareness Month draws to a close, it’s given me time to reflect on my own journey — the time, money, frustrations and guilt associated with the disease, but mostly the silence.

The disease has no cure and doesn’t show up in ultrasound or MRI scans, and with little research or funding behind it, the perfect storm leads to an average diagnosis time of seven years.

Characterised by tissue similar to that lining the uterus but growing outside the uterus and on other parts of the body, the disease affects one in nine women or those born of female sex.*

Endo symptoms usually feature pelvic pain, with heavy bleeding and severe period pain the two most commonly associated, but the condition manifests differently in everyone and the severity of symptoms doesn’t always align with how much endo is in the body.

Endo awareness month: A time of reflection and processing. Photo by Megan Fisher

After more than 10 years, I found my answer last year in a diagnosis through the only definitive way possible, a laparoscopic surgery.

And while I got my answer, I also got angry.

Angry that so much of my young life had been spent screaming into the void, knowing in my body that something wasn’t right but that being a young woman, it was bordering on impossible to find someone to listen.

I’ve been through countless appointments with doctors, physiotherapists and specialists, undergoing ultrasounds and being put on differing contraception methods to ease the pain from a young age.

Thousands of dollars spent out of pocket in search of some indication that I wasn’t going insane, that I wasn’t lazy nor was it all in my head.

But more than that, the intangible exhaustion that comes with endo can be as gut-wrenching as the physical symptoms.

Constant guilt for missing work, school or simply, just life; the frustration of having your body work against you, handling symptoms you feel you should just push through but physically can’t.

If there were some education, accessibility to resources or even an open dialogue on the disorder, could things have been different?

More than anything and even after surgery, the unknowns loom large.

The unknowns play into the taboo that surrounds endo, a disease that so many people speak of in hushed tones to avoid causing offence, labelling it as “women’s issues” and promptly throwing it into the too-hard basket.

It’s not advocacy if you’re shutting down the conversation — if it’s too scary to talk about, think about how scary it is for one in nine to experience it, day in and day out.

Excuse me for being frank, but this disease has made me grow up in so many ways — much faster than anticipated.

Among many other endo-sufferers, I was poked and prodded and underwent a number of internal and external ultrasounds well before reaching the Australian legal age.

I properly acknowledged my own fertility at the age of 16, confronted with the prospect that having children genuinely may not be on the cards for me.

And going on 24, without any huge research efforts put towards endo, this remains something to deal with further down the track, always back of mind.

These statements might seem strong and somewhat complaintive but if you put a group of endo-sufferers in the same room, no matter the differing symptoms, there’s a collective element.

What brings so many of us together is a flawed system, being overlooked and unheard, suffering for years because we’ve been taught to remain silent.

Even within this piece, careful consideration has been given to what is to be shared and what may still be “too much”, but I am sick of holding shame over a condition I have no control over.

The face of endo is seen as grisly and gory, and don’t get me wrong, it very often is those things.

Debilitating pain reverberating down your legs so you can barely stand, agonising bloating, bleeding that would make even the strongest of hearts weak — a lot of the time it is those symptoms and more, but you wouldn’t know.

The real face of endo is the person sitting quietly at their desk practising breathing exercises to get through the pain, it’s the person going about everyday life with a smile on their face while their world is shattering inside them.

The face of endo is many things, but it shouldn’t have to be kept a secret.

Because until it’s no longer seen as just a “women’s issue” for us to just deal and get on with it, there’s still a hell of a lot that needs doing.

*Including individuals in the transgender community and people who are non-binary and living with endometriosis who may not identify as women.