Anne Johnson spent years trying to have a baby.
She fell pregnant six times but wasn’t able to carry a child to full term.
Ms Johnson never knew her uterine fibroids were affecting her fertility, only learning about the extent of the condition later in life.
“I had to give up hope and when you don’t have hope, it’s very depressing that you can’t have a child,” she said.
“Because I only wanted one, I wasn’t being greedy.
“The medical doctors said, ‘Oh that’s just one of those things, when you’re a woman, that you put up with and it’s just part of life’.
“But as years went on, it still never improved.”
Uterine fibroids are non-cancerous tumours, forming in and around the muscle layer of the uterus.
The growths can range from one to 20 centimetres in diameter.
What causes uterine fibroids?
It’s still unknown.
Many women are asymptomatic, but others experience intense pelvic pain and heavy periods.
In Ms Johnson’s case, it caused long-term fertility issues.
“It was really an emotional roller coaster, and it really took a toll. It was really frustrating because I couldn’t get an answer,” Ms Johnson said.
“There doesn’t seem to be any more progression from when I was in my 30s trying to get pregnant to now when I’m in my 60s.”
“The poor women coming through this same cycle need help, (they) need some answers.”
Ms Johnson had a hysterectomy at 51 due to the ongoing pain from her uterine fibroids. It was only then she discovered she also had endometriosis.
She uses art as a therapeutic outlet, to deal with the emotional pain that still lingers today.
An unclear picture
Uterine fibroids are considered common, but the number of women affected remains unclear.
Perth-based gynaecologist and fertility specialist Tamara Hunter believes the figure is about one in three women, but said the confusion is a testament to the lack of research on the condition.
“For many decades, women have been told to kind of deal with it … things like endometriosis, adenomyosis, fibroids. But I do think we need to start paying more attention,” Dr Hunter said.
“You might see fibroids that completely take up the whole muscle layer of that uterus, and it’s like, why did this happen?”
Currently, there’s no known way to prevent fibroids.
Without a clear understanding of what causes them, prevention and early diagnosis remain difficult.
Uterine fibroids can impact fertility in multiple ways.
Dr Hunter said they can create a “toxic environment for an embryo” due to inflammation, or physically block successful implantation in the uterus lining.
“Being benign, people think if you don’t have any symptoms, then they’re not worth worrying about,” Dr Hunter said.
“But the thing about fibroids is they actually grow with time, largely under the influence of hormonal control.
“They can grow very slowly over a number of years to become of a size where they start to impact on symptoms.”
For symptomatic women like Anne Johnson, invasive surgery to remove the fibroids is the most common path.
‘Don’t suffer in silence’
Bethany Lord, CEO of women’s health service Luma, urges women not to “suffer in silence”.
“We need to find ways to prevent these conditions before they start impacting women’s lives,” Ms Lord said.
Ms Lord wants more collaboration between policy makers, health providers and researchers to “push these issues forward”.
“If you do think it might not be normal, or you are worried, come and see someone come and actually reach out for help,” she said.
Committed to change
Improving diagnosis and treatment of reproductive health conditions like uterine fibroids is a priority outlined in WA’s women’s health policy.
In a statement provided to the ABC, a Department of Health spokesperson reiterated this commitment.
“This policy drives equitable, accessible, and appropriate services that optimise the health, safety and wellbeing of women and girls in WA,” the statement said.
