Endometriosis affects more than 11 per cent of Australian women. A Westbury woman is hoping to bring more recognition to the disease with a 200km ride.
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Endometriosis occurs when the tissue that is similar to the lining of the womb grows outside it in other parts of the body.
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Symptoms can vary from person to person but can include painful periods, painful sex, heavy or irregular bleeding, pain with bowel movements or urination, nausea and fatigue.
Endometriosis Australia said that it was estimated the disease costs the Australian society $9.7 billion annually, with two-thirds of the costs attributed to a loss in productivity.
The fundraiser
Belinda Cohen, who lives with the debilitating condition of endometriosis, will ride from Launceston to Hobart on March 27 to raise awareness and funds for Endometriosis Australia, and the condition itself.
"It's all about getting people talking, starting the conversations and if you have got symptoms with pain, bladder symptoms, bowel symptoms to go to your GP, and get a referral to an endometriosis specialist," she said.
"Currently there are none in Launceston or in the north, so travelling is a big factor."
Ms Cohen said she had already started conversations in her workplace about the condition, what symptoms may or may not be normal to experience, and that if someone is concerned that they should see the right specialist.
"[I am] just trying to get the word out there," she said.
Ms Cohen hopes to finish her ride on the waterfront in Hobart, breaking down the kilometres into 60-70km chunks.
It will be the biggest ride she has ever attempted, with her previous record ride coming in at 100km.
Ms Cohen's father, Bob, will be riding with her on the day for support, and they will both be in bright yellow vests with writing on the back supporting the cause.
"I'm extremely lucky I've got my husband, my daughter and my parents. I have a huge support system and my workplace is hugely supportive."
She said if someone drives by and sees her to beep the horn and encourage her to keep going.
"We would love lots of encouragement on the way."
Ms Cohen said her and her father hope to start riding by about 5am on the day, but had no time goal in mind.
"It's not a race," she said.
"Our aim is to get there and just get the word out."
The goal of the fundraiser is to raise $5000 for Endometriosis Australia, and so far nearly $2000 has been raised.
Endometriosis Australia aims to raise funds for research and increase the recognition of the disease by providing education programs.
"There is no cure for endometriosis but with growing awareness and support for the disease, we can hope that the next generation will not go through their struggle in silence," Ms Cohen said.
To donate visit endoaustraliafundraiser.org.au/belinda-cohen.
Belinda's story
Ms Cohen has lived with the pain endometriosis since she was about 16 - when she started having painful periods.
"That went into pain regularly, almost daily," she said.
"I ended up getting hospitalised, I'd pass out in public, start vomiting from the pain and it was quite humiliating actually, and very scary because you didn't know what was going on with your body."
Ms Cohen said she was told there was nothing wrong with her, and that she should see a psychologist as the pain was "all in her head".
"That's a huge worry for people who have this because they aren't getting listened to when they first try and seek help," she said.
Endometriosis can often take between seven and 12 years to diagnose, with Ms Cohen's diagnosis coming in at seven years.
"I was about 23. I graduated university on the Saturday and was in surgery on the Monday, and that's when I got the diagnosis."
Ms Cohen said she wished she had had the knowledge she had now as she would have travelled to see an endometriosis specialist to get the correct help earlier.
"Getting the right help at the beginning ... is really important," she said.
The endometriosis warrior said she was told so many times she was wrong, but persistence was crucial.
"I couldn't drive, I couldn't work because these attacks kept happening. So I didn't have much of a life at that point.
It even affected her teaching career.
"I have spent some time on the floor in classrooms before I got treatment just in agony. It affects everything," she said.
"I had cysts and I was told they were normal for someone my age, nothing's wrong. You feel helpless and you don't know where to turn to, but there are people out there.
"There's an amazing community of endo warriors now, and there is support."
Ms Cohen said she had been through multiple surgeries and tried so many treatment options she had lost count.
Currently Ms Cohen is on a treatment that puts her in temporary menopause, but the treatment is also temporary - lasting only six months.
"That's why I've chosen this time [to ride], because my pain levels are quite low. [It]'s now or never."
Dana Anderson
On a Friday night you may see me at the theatre, a festival, an exhibition, or in the corner of one of my favourite establishments reading a novel. So, it makes sense I am the arts and what's on reporter for The Examiner. To contact me about a story please send an email to dana.anderson@examiner.com.au
On a Friday night you may see me at the theatre, a festival, an exhibition, or in the corner of one of my favourite establishments reading a novel. So, it makes sense I am the arts and what's on reporter for The Examiner. To contact me about a story please send an email to dana.anderson@examiner.com.au
