For Ellen Parker, living with endometriosis is a constant struggle.
Ellen was diagnosed with the disorder in 2016 after almost three years of continuous pain.
She says one of the hardest parts of living with the disease is its unpredictability.
“At first it was hard not knowing what it was but now that I have it, I guess it’s the unpredictability,” she says.
“For me, one day you can be living a regular life and you can just be walking through the shops and then you might be in chronic pain the next.
“Not being able to predict what’s going to happen is hard.”
Endometriosis is a disorder where tissue similar the one that forms the uterus lining grows outside of the uterine cavity on places like the ovaries, fallopian tubes and intestines.
The most common symptoms include pain and menstrual irregularities, but it can appear differently for every woman.
One in 10 women suffer from the incurable disorder and, according to Endometriosis Australia, it impacts on all aspects of a woman’s life.
Ellen believes there is room for more awareness but says society is moving in the right direction.
This month marks the worldwide EndoMarch – a four-week campaign to increase awareness of the disorder and raise funds for research.
It includes events such as March Into Yellow, which encourages people who have endometriosis, or know someone who does, to don the bright colour and promote the condition online.
“I definitely think it’s getting bigger, things like ‘Endo month’ and ‘[March Into] Yellow’ are picking up,” Ellen says.
“But I don’t think there is necessarily the same awareness that there is for things like breast cancer, and endo affects [so] many women.”
For most women with endometriosis, it is a struggle because the disease is invisible, and symptoms are not always treatable.
“There are things you can do to mask the symptoms, but things come back because there is no cure,” Ellen says.
She adds that it is hard when people aren’t aware of the disorder and it can be hard to talk about.
“It is difficult if people don’t understand what it is or what effects it can have on people and how it can be different for every individual,” she says.
Go to endometriosisaustralia.org for more information or to donate to EndoMarch.
