The last taboo: It’s hard to talk about endometriosis.

When I got my first period I walked out of the bathroom crying and scared. My mum told me, “Don’t be scared, it’s normal”. But getting your period in my family was never normal.

That’s all thanks to endometriosis; an ugly and unspoken disease that afflicts the women in my family.

I will never forget the time my mother was in so much pain she could hardly see straight and crashed her car in the middle of the city.

I will never forget the family holiday we took to Hong Kong, when my sister was close to haemorrhaging, barely able to walk 100 metres in a shopping centre, before having to run to a bathroom. She was bedridden for days, so pale and weak from the loss of blood.

Emily with her mother. Image supplied.

But this disease is more widespread than you may think. Girls star Lena Dunham recently opened up about the ongoing pain and struggle she has had with the disease, bringing the issue to the public’s attention. And she’s not the only woman in the spotlight who has suffered. The ones we know are Hillary Clinton, Marilyn Monroe, Nicole Kidman and Khloe Kardashian, but as it effects one in 10 women, they would have to be the tip of the celebrity iceberg.

Growing up the idea of getting my period was something along the lines of the door scene in The Shining.

Video via Warner Bros.

It was something I had to be prepared for, it didn’t feel like a normal right of passage, and in no way, shape, or form was I excited when it happened.

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I watched my mother and sister deal with the monthly heavy bleeding. I had seen them hunched over on their beds, clutching their stomachs in pain, or their bodies would simply shut down from fatigue. But despite all of my knowledge and apprehension, I’m one of the lucky ones.

For those of you who don’t know what endometriosis is, it’s a disease that causes the tissue lining of the uterus to grow outside of it (shedding the lining of the uterus is what causes a period). It can often grow on surrounding organs such as the ovaries and bowels. Its symptoms can range from anything including crippling period pain, nausea and lethargy, pelvic pain and pain in the lower back and thighs.

Endometriosis Australia tells us that 10% of women will experience the effects of the disease at some point in their life, and in a recent study they have proven that there is a 7 to 10 year delay in diagnosis. Going undiagnosed for so long can cause irreparable damage to a woman’s fertility. Some 30% of infertility cases are caused by endometriosis. A statistic my sister and I have grown up with, the idea of not being able to have children lingering in the back of our minds.

Emily (L) with her sister. Image supplied.

I’ve grown up with people around me who knew, and had experienced first hand the effects of the condition. I was given a head start about the impact it can have on your everyday life, and where to seek help. From my first period and the few years after, I got a true taste of what 'endo' was like. I can only compare it to being stabbed from the inside out and the, almost complete, draining of your energy.

At 15 I was put on the contraceptive pill and since then my symptoms have been at bay. However, it seems to be getting worse. My symptoms are heightened and, over time, the benefit of the pill seems to have decreased. I'm worried about my future, the impact this disease may have on my fertility, and the impact that taking the pill for so long has had on my body.

When a disease is so prominent in your life you just assume that everyone else knows about it and would understand.

Emily. Image supplied.

So many people I speak to ask, “What’s that?” or “Wait how do you pronounce it?”. Many women are forced to suffer in silence, being told they’re just ‘PMS-ing’ or that “it’s all in your head." Many go completely undiagnosed.

It’s difficult when the condition isn’t considered a real disease because it’s unseen. You often cannot identify it in ultrasounds; generally it has to be diagnosed during surgery. Not only that, but God forbid we discuss periods in a social setting to spread the word. Period chatter often solicits awkward glances and a swift uncomfortable change of subject.

When a condition can have such an impact on a woman's life, it needs to be talked about. I know I’ve been lucky enough to have it taken care of early. My sister has already undergone five surgeries to treat her endo and my mother was left with no option other than to have a hysterectomy and induce early onset menopause at 50.

Women need to know it’s not just ‘in our heads’. Something needs to be done earlier to prevent the chronic pain and long-term consequences. We need to talk about our periods, so we know what is normal and what isn't, so women who need it can get help and don't have to suffer more than is necessary.

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