Not just within Emily, but within anyone.
It’s just one incident on a long list of inconsistencies the 23-year-old truck driver has come up against throughout the seven years it took for professionals to reach a diagnosis and the 10 years she’s suffered with the chronic inflammatory disease.
Endometriosis causes tissue similar to the lining of the uterus to grow outside the uterus, resulting in pain, inflammation, scarring and, in many cases, fertility challenges.
According to Endometriosis Australia, about 14 per cent of Australian women and girls have endometriosis, equating to about one million people across the country.
During Endometriosis Awareness Month this month, Emily’s wish is that more people understand it is an invisible illness.
“From the outside, I often look completely fine, but that doesn’t mean the pain isn’t there,” she said.
“Flare-ups come without warning; I can’t plan them, stop them, or rearrange my life around them. They arrive on their own terms and I have to adapt.”
Emily said whether someone was in stage one (few, superficial lesions) or stage four (widespread deep lesions, large cysts, dense adhesions), symptoms varied markedly.
“I hope others can understand that what you see on the outside is only part of the story,” she said.
“What we manage internally takes strength, patience and a lot of self-compassion.”
Emily has been affected since her period started at 13, when she immediately started experiencing heavy and painful flows.
“For as long as I can remember, I had severe period pain that often left me unable to eat, frequently fainting and struggling to move,” she said.
“During my time at boarding school from age 15, there were many days I could barely get out of bed. I often spent time in the school nurse’s office simply trying to sleep through the pain.”
She estimates throughout her teenage years there were around 15 times she was mistakenly diagnosed as having appendicitis.
She has had to have surgery, but not to remove her appendix — that’s still intact to this day — rather, for her endometriosis.
And not just once since her diagnosis at 20, but four times in three years.
“It has taken a huge toll on my health and mental health,” she said.
“Being off work for weeks at a time is a huge struggle both financially and the fact I feel I am constantly letting the team down.
“My social life has always taken a toll as I can never make major plans as I never know what I will feel like when that day comes.”
It has also meant she’s had to pull out of equestrian events at the last minute, also at significant financial loss.
While there is no cure for the disease, Emily has learnt ways to manage her pain.
“To help myself cope, I now carry a small kit everywhere I go, which includes my pain relief, any medication I might need, a rechargeable heat pack and a TENS machine,” she said.
“These tools have become essential in helping me get through the more severe flare-ups and continue with my day as best I can.
“I’m always so worried about what is going to happen ... I guess you could say you somewhat live with some fear as to when the pain will hit next.”
On top of educating others about endometriosis, Emily would like to see the Federal Government offer more support for those affected, including adding specific medications to the Pharmaceutical Benefits Scheme, and more endo-specific clinics established in regional areas.
“No-one should have to suffer in silence or feel dismissed when seeking help,” she said.
“Raising awareness is one of the most powerful ways we can create change.”
For more information on endometriosis, visit the Endometriosis Australia website.
To hear the full interview with Emily, listen to the latest MMG podcast here:
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