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Daisy Richardson: The Pain Was Unbearable, But No One Believed Me For Years

"You don’t look sick."

That's the most frequent and dreaded phrase anyone with a chronic illness will hear.

Unfortunately, it’s not just spoken by the passers-by, the strangers, the amicable work colleagues.

I have sadly heard this line even from close friends and health professionals.

I’ve had one doctor go as far as laughing out loud, telling me that just by looking at me, she could tell I "wasn’t sick”.

Despite their doubts and that doctor’s misplaced confidence, I now know the name of my condition.  For me, like the other thousands of women afflicted, it took almost 10 years to be given an endometriosis diagnosis.

Except it's not.

Looking back now, there were a few pivotal moments for me when I knew something wasn’t right. I remember being curled up in a little ball on the floor of my high school health centre, tears streaming down my face from the pain as the school nurse told me I was faking it to get out of PE.

I remember at 14, spending the day in the park with the boy I had a crush on, getting up to leave and losing so much blood on the 10 minute walk to the train station that it was on my ankles.

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I remember sitting in my car years later, angry and hysterically crying after a doctor -- a female DOCTOR -- had laughed me out of her rooms. That would be my ninth incorrect diagnosis.

Finally, I remember coming out of a laparoscopy in an anesthetic haze in 2017, and being told what I think I had known for a very long time: I was sick and I had endometriosis.

For those who don’t know, endometriosis (or endo) is a condition affecting one in 10 Australian women, where the tissue that usually lines the uterus grows outside of it. It is extremely painful, there is no known cause or cure and the federal government only announced a national plan to fight the condition at the end of 2017.

What did women with endo do before this? I hear you ask. I shudder to think about living an entire life of facing doctors’ doubts and misdiagnoses. Because endo very rarely appears on ultrasounds, the only way to diagnose it is via surgery. That’s right… they have to cut you open just to confirm you’ve even got it.

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It is a chronic illness with a wide spectrum of side effects including fatigue -- not surprisingly, your body is working overtime to try and heal itself. Sometimes you can just wake up in the morning and be bedridden for the entire day, having felt perfectly fine when your head hit the pillow the night before.

Socially, being diagnosed with endo at 22 is an even tougher pill to swallow.

You’re being told you have this disease which will affect your fertility, but starting a family is the last thing on your and your friends’ minds. You hear a lot of ‘you’ve got plenty of time’ and ‘technology will have come so far by the time you’re ready to have kids’.  Your friends are also hitting their young adult strides, graduating, partying, moving out… family planning is the last thing most of your 22-year-old friends want to be talking about.

And the stigma around reproductive diseases is still huge. As soon as you say words like ‘period’, you can see the eyes glaze over. People don’t want to talk about it, it’s not sexy and it’s not easy to discuss.  But your window of fertility has been chopped in half and the deadline has been brought forward to potentially a few years from now.

So what do you do?

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Another huge endo side effect is the cost. The painkillers, the surgeries, the specialist appointments, the time off work to go the appointment, they add up fast. I have had three surgeries in as many years, and I am one of the lucky ones. I’m in the private system and financially fortunate but surgeries can be upwards of $5,000 each. It’s not uncommon for all the extras to come to more than $30,000 annually.

It can go the other way too. I know others in the public system that have been on waiting lists for years, with no surgery (and therefore no diagnosis) date in sight.

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Right now, aside from financially supporting research, the biggest headway we can make is by educating women on the disease. Listening to your body, seeking further opinions if you, like me, come across a doctor who isn’t aware of or able to give you a clarified diagnosis.

Speak to your friends and family, open up the dialogue on reproductive diseases to reduce and eventually remove the stigma. The statistics alone show that you or someone in your circle probably has it, so most of all let's support ourselves and offer support to one another.