How medically oversharing led me to discover my endometriosis.

If you’re suffering from Endometriosis or experiencing symptoms, always seek medical advice from your doctor for diagnosis and treatment options.

Almost a decade ago, at the age of 17, I found myself eagerly awaiting the arrival of my period. My first period.

The offensively pink Libra starter pack gifted to me during my earlier years of high school had become imprinted in the bottom of my bag. Lodged under the heavy weight of textbooks, it remained unused but not untouched.

I’d thumbed through its contents more times than I cared to admit, while every other girl I knew had well and truly exhausted it. The paper instructions had kept their perfect creases and despite the lightweight nature of the pads and plastic, the fullness of it felt like a lead weight.

I should have felt grateful for my extended period-free status but all I could see and feel was a physically immature body and the excruciating self-awareness of it all. Then there was that silent but much louder fear that some very crucial gear was missing.

I saw a rite of passage being experienced by every other woman, just not this girl.

I devoted considerable time and effort to examining the profiles of those around me, measuring my development and age against theirs as I desperately tried to map my female form on some elusive timeline.

I grew frustrated by the solo nature of the task and decided to enlist the help of a local GP. I booked in for my first ultrasound and promised myself that even an unhealthy fear of nudity wouldn’t stop me.

The results came back: nothing was visibly wrong. No one could explain my missing period.

A few months later, the anxiety over my very missing period was laid to rest, as I farewelled my first pair of ruined underwear. What I didn’t know was that each and every period from that point on would fuel a disease inside of me.

I found myself back in front of another ultrasound machine, within a few years. It felt too soon to question my newfound status of womanhood but something was terribly wrong.

It started with twinges of pain and before long morphed into what felt like the worst imaginable case of food poisoning but with that unmistakable sign of heavy red.

I was the only person I knew with a cycle of eight days or longer and within two years, those initial twinges turned into a full body reaction of shakes, alternating chills and fever, excruciating throbbing throughout my abdomen, stabbing pain and vomiting.

My body heaved its way through each cycle and by the time I reached 25, my haywire menstruation was accompanied by chronic UTIs, bloating, unbelievable fatigue and aches and pains that I couldn’t shake.

My whole body felt sick but I wasn’t hearing or seeing my story mirrored in any of the women around me. I started to consider it an unwelcome but “normal” female experience. Babies had trouble with teeth, maybe periods and vaginas just had teething periods too.

Looking back 10 years after the fact, nothing pains me more than to recall the dogged – albeit naïve – way that I yearned for that first period.

I now have a medical name to explain the heavy and painful menstrual cycles; the vomiting, fatigue and related symptoms. I can recognise what’s responsible for those barbed wire sensations piercing through my abdominal area. I now know why sex felt like an excruciating ordeal and no, it wasn’t the false assumption that maybe my hymen had “never really settled”.

I’d had years of poor health and for a long time didn’t have any answers but I knew that my energy had suffered immensely, as did my general physical, emotional and mental health.

In October 2015, I had laparoscopic surgery and was officially diagnosed with endometriosis and suspected adenomyosis (a separate condition specific to the uterus).

I’m lucky that a friend suffering from the same issues mentioned her diagnosis and prompted me to see a specialist. Without medically oversharing with that one person, I wouldn’t have found the answers.

In getting diagnosed, I now realise how incredibly fortunate I am compared to so many of the women battling this painful disease. For the millions of women worldwide and the one in 10 Australian women dealing with endometriosis, it can mean not only immense physical pain but also infertility.

The women facing either or both of those scenarios are women you already know. It’s not difficult to understand why those numbers may seem surprising, when you consider the private nature of menstruation but also the deafening silence around it.

The condition known as endometriosis is one that impacts the female reproductive system. It involves a specific type of tissue, which is often said to be similar but not the same as what is found inside the uterus. This tissue typically embeds itself in the walls of the pelvic cavity, as well as attaching itself to and around reproductive organs.

In addition to the unwelcome growths and associated pain that go with the disease, a host of various treatments can often be required to combat the worst of it, sometimes involving one or more surgeries.

There is no cure or definitive answer as to the cause of the disease and while research is underway, much of the basic information that needs to be shared is not always reaching the women who need it most. Or worse, the information that is being shared isn’t accurate.

I don’t pretend to speak for any or all women diagnosed with endometriosis but know firsthand why the pain and consequences of the disease simply cannot be downplayed. It can place an incredible strain on women in a personal, professional and financial sense.

It’s unacceptable that millions of women suffer the ramifications of this disease and more often than not, in private. We need awareness and understanding to be built and shared for every month of the year, not just Endometriosis Awareness Month this March.

The more of those red flags we share, the more girls and women around us know to question their pain and get diagnosed sooner. Whether you’re a woman, a partner of a woman, a family member or friend of a woman, starting or ending your reproductive phase, sharing the knowledge and awareness is crucial.

Know your period, question your pain and encourage others to do the same because it’s a conversation that we can’t afford not to have. I’m indebted to the woman who started the conversation with me. Please, let’s all be that kind of woman.

Mamamia's Endo Awareness Week, curated by Founder of EndoActive Syl Freedman, shines a light on a disease suffered by one in 10 Australian women. To read more from Endo Awareness Week, click here. If you'd like to find out more information on Endometriosis, Syl's story or EndoActive, visit endoactive.org.au and keep up to date on their Facebook page.