Anyone who meets Jessica Duncan would be forgiven for thinking the 22-year-old is a normal, healthy young woman.
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However, the Moree woman lives in pain every day from a disease many have never heard of.
The first time Jess had heard of endometriosis – a condition that causes the tissue that normally covers the inside of the uterus to grow outside the uterus – was at the age of 17 when she was diagnosed with the disease.
Her diagnosis came five years after she first began experiencing debilitating pain.
“I wouldn’t be able to get out of bed from the pain,” she said.
“I had no idea what was wrong. It was a constant round of doctor’s appointments and tests.”
While her friends were enjoying just being teenagers, Jess was living in constant pain which saw her schooling and social life suffer.
At the same time, she had to deal with friends, teachers and even doctors not believing her.
“It was so hard; I missed so much time off school,” she said.
“At one point I missed more than two months of a semester.
“I didn’t get to experience normal teenage things. I was attending doctor’s appointments and being miserable in pain.
“The pain and suffering was hard to explain. A lot of people didn’t believe me.
“The first doctor I saw, a GP in Tamworth, thought it was normal period pain and thought I was doing it for attention.
“A lot of my friends didn’t believe me, so I lost a lot of friends, and I had a bit of depression.
“Teachers didn’t understand.
“It’s such a taboo. How do you explain why you’re having so much time off?”
It wasn’t until Jess returned to Moree after living in Tamworth that she was diagnosed with endometriosis by Pius Medical Centre’s visiting specialist, Dr Egan.
“Dr Egan diagnosed me in 10 minutes. He said it was an 80 to 90 per cent likelihood of being endometriosis,” Jess said.
“However they couldn’t be sure until I had a laparoscopy [keyhole surgery].
“After five years it was a relief.”
And Jess considers herself lucky; for most women with endometriosis – one of the leading causes of infertility – it can take between eight to 10 years to get a correct diagnosis.
Jess was diagnosed with stage three endometriosis and while the surgery to remove the growth saved her fertility, she only has until she’s 27 to be able to fall pregnant.
For Jess, endometriosis has changed her life. After collapsing during the HSC and going on an alternate pathway to get into university, she eventually had to give up her dream of becoming a doctor.
She still experiences pain every day, but through a multi-disciplinary approach, combined with medication to manage the pain, she’s learnt to live with the incurable disease.
Despite one in 10 women and girls suffering from endo, Jess said because it isn’t talked about, you often feel isolated and alone.
Which is why she, as a member of the Pius X Aboriginal Corporation board, has organised a Living with Endo seminar in conjunction with EndoActive.
All women, particularly those who have endo, are invited to attend the seminar and hear from some of the world’s best doctors and specialists, and have the opportunity to talk to others suffering from the disease.
“A lot of women suffer in silence,” Jess said.
“A high number of our clients at Pius were being diagnosed with this disease.
“There are women coming from all over that will access these services that they wouldn’t normally in their day-to-day lives.
“From that, they’ll be able to tell a friend, tell a mum, tell a sister and break that taboo in Australian society.”
The seminar, which is being funded by the NSW Ministry of Health, will be held at the Max Centre in Moree from 9am to 5.30pm on Thursday, March 1.
For more information, or to RSVP, call Jess Duncan on 0428 099 777.