'I've had endometriosis for 25 years. There are sides of it no one talks about.'

Thanks to our brand partner, Youly

A sedative, a Dolly magazine and two days off school. This was the period-survival kit my mum was prescribed by her male doctor each month growing up. Mine wasn't that far off. Replace the sedative with a handful of painkillers and you'd never know we were talking about two different people — decades apart.

Ever since I can remember, each period I've ever had has been punctuated by days of nausea, intense pain, upset stomachs, bloating, foot cramps, vomiting, hot flushes and occasional fainting spells.

I would never know exactly when these symptoms would hit, or how bad they would be each month, but I was constantly on guard. Always waiting for the bad thing to happen.

This meant I had to become really good at sneaking around and lying. The one time a teacher at school found me hiding in a corner, trying desperately to pop a painkiller before the pain in my lower back started to spread down my legs, I was chastised and shamed in front of my entire class.

If I asked to be sent home, I was either lying or being dramatic. 

I'd be lucky if my period hit on a weekend. Most of the time, you could find me hiding in a bathroom stall trying not to pass out, begging friends to sit with me on the bus until I could get home safely, or explaining to the boss at my casual after-school job that I couldn't come in again because I was unwell.

Later, as a young adult, my parents would have to scour the on-campus bathrooms at uni to find me, pick me up (quite literally) and drive me home.

Pain doesn't care if it's a school day, a work day, your birthday or even Christmas Day. It arrives when it arrives, and it's up to you to deal with it.

Despite having spoken to my doctors at length for years about the incredible pain I was experiencing each month, and all the days I was losing to lying in bed curled in a ball with a bucket next to my pillow, I was told it was nothing to worry about.

The comments were always the same… your mum went through this and she's fine — it must be genetic, your cycle is regular, the pain only lasts two days and other than that — you're okay the rest of the month. Let's not do anything.

Yes, this was all true, but what about those two days where I wasn't fine? What about the two decades of constant pain relief and the cost of missing school, work, university, celebrations, events and all of those other life moments?

As an adult, I can now look back and instantly recognise that each of my symptoms were very clearly signs of endometriosis.

Yes, my mum experienced the same issues, but endo can be hereditary.

Yes, there was no sign of endo during my many pelvic ultrasounds, but endo is often invisible and rarely found during ultrasound.

Yes, the pain can be managed two days a week but the experience of chronic pain can influence the way our body perceives and reacts to pain in the future. 

I so wish I'd had access to an online healthcare provider like Youly growing up, so that my experience could have been validated earlier, and I could figure out a treatment plan with professionals actually interested in helping me with my debilitating endometriosis symptoms.

Not only does a service like Youly help with everything from everyday health to sexual health and skincare, the medical team are all based locally in Australia. The care is affordable and accessible so that you can have your appointment from anywhere — even your bed.

And your prescriptions can be delivered to your door, so you don't have to leave the house if you're in pain. I truly wish I'd had something like Youly available all those years ago so that one simple phone call could have changed the trajectory of my journey. 

Eventually, as so many of us do, I gave up. At the time, my doctors were either unable or unwilling to help. No one recognised endometriosis back then the way they do now.

I knew deep down I had endo and that my level of pain wasn't normal. I knew all those other weird symptoms (like cramps in my feet, the urge to pee, upset stomachs, and nausea) weren't typical of the experience my friends were having each month. So, why couldn't the doctors see this too? 

It was only when I was trying to get pregnant and failing miserably that the doctors finally listened to me. It was only when I was unable to create life that anyone cared about the quality of mine.

I lost two years trying to fall pregnant. Each month peppered by moments of confusion, disappointment, anger and sadness that could have been avoided if anyone had just listened to me. 

Eventually, we were recommended to look into IVF, and referred onto an IVF specialist — who within two minutes of listening to my story, interrupted our conversation to tell me it was clear I had endometriosis, and I needed to see a specialist. Another doctor, another appointment. But gosh, I've never been more thankful for a doctor in my life.

Within one appointment, he told me he was sure I had endo and that I'd need a laparoscopy. I had my first laparoscopy locked in (more than 20 years after first experiencing endo symptoms) and suffice to say, I had endo everywhere. On my bladder, my bowel, my ovaries and any other spot you can imagine.

Within two months, I was pregnant with my daughter. 

While incredibly elated and forever grateful for this 'happy ending', I am filled with an enduring rage that it took so long to get to that point — that we lost years to infertility caused by endo, and that this has also impacted our ability to try for a second baby.

I'm mad for all the lost days, the gaslighting, and the fear and confusion that is still so closely tied to my experience. 

When it comes to endo, we hear about the pain. What we don't hear about is the emotional impact of not being believed, understood or respected. We don't hear about the crushing reality of realising that you and your pain don't matter until it impacts your ability to do the one thing that society expects every young woman to do. 

There was no need for my journey to play out the way it did, and I will make it my life's mission to ensure that my daughter never goes through the pain and trauma that was experienced by her mum and her grandmother. The cycle stops now.   

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This information is general in nature and does not replace the advice of a healthcare professional. As with any condition or treatment, always seek health and medical advice from a qualified healthcare professional.

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Feature Image: Getty.

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