"Endometriosis is an ugly and unspoken disease that afflicts the women in my family."

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

When I got my first period I walked out of the bathroom crying.

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.

But this disease is more widespread than you might realise. Girls star Lena Dunham opened up about the ongoing pain and struggle she has had with endometriosis, 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 of are Hillary Clinton, Marilyn Monroe, Nicole Kidman and Khloe Kardashian, but as the disease effects one in 10 women they would have to be the tip of the celebrity iceberg.

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

I'd watched my mother and sister deal with monthly heavy bleeding. I'd 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.

Endometriosis is 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, and its symptoms can range from crippling period pain, nausea and lethargy, to pelvic pain and pain in the lower back and thighs.

Endometriosis Australia tells us 10 per cent of women will experience the effects of the disease at some point in their life, and in a recent study they have proven there is a seven to 10 year delay in diagnosis. Going undiagnosed for so long can cause irreparable damage to a woman’s fertility. Some 30 per cent of infertility cases are caused by endometriosis. This is 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.

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 having your energy almost completely drained.

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

When a disease is so prominent in your life you just assume everyone else knows about it and would understand. Yet 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 a condition isn’t considered a 'real disease' because it’s unseen. You often cannot identify endo 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 disease 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.

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 Endo Active, visit endoactive.org.au and keep up to date on their Facebook page.

This piece has been republished with full permission from Debrief Daily. You can read the original post here.