Haylee Penfold and her partner Kye Manning have dreamed of being parents for years.
“It’s all I’ve ever wanted and all he’s ever wanted,” Haylee said.
When Kye’s Dad passed away a few years ago, the pull towards fatherhood intensified.
“After losing [Dad] I grew those feelings a lot more, that I want to have my own children,” Kye said.
Despite trying naturally for over two years, Haylee’s severe endometriosis has prevented them from falling pregnant.
Due to “completely debilitating” pain and years of suffering, Haylee, 24, has made the decision to undergo a hysterectomy.
But, before she does that, the couple are giving parenthood a final chance.
“We’re starting IVF in a couple of weeks because we wanted to give it one last shot,” she said.
‘Completely debilitating’
Haylee said she first started experiencing painful periods at the age of 12.
After years of agony, fainting at school and being ignored by doctors, she was still fighting for her pain to be taken seriously, right up until her diagnosis seven years later.
“[The doctor] told me that she probably won’t find anything, but when I had the surgery done, she found endometriosis on my bowel, bladder, ovaries, uterus, pouch of Douglas, my kidneys,” she said.
“It was everywhere.”
Ten surgeries later, Haylee’s endometriosis still affects her every day.
“My pain is completely debilitating,” she said.
Haylee has bladder and bowel problems, she regularly faints and vomits from the pain, and she has to see a physio regularly “just to even cope or go to work”.
Kye is now Haylee’s carer, which he said was a role that felt natural to fill.
“This is what a partner does, you stay through the tough times and the hard times,” he said.
The next steps
The decision to undergo a hysterectomy was not taken lightly, especially given her age.
But Haylee said it had “come down to quality of life”.
Each surgery sets her back around $3,000, and she is currently having them every six months.
“It’s a lot mentally,” Haylee said.
IVF is also not cheap, prompting her friends to set up a fundraising page to contribute to the costs.
Haylee believes she’ll get the hysterectomy within the next two to three years.
“We’ll see how the IVF affects me mentally and physically to see how many times we try,” she said.
“As much as we really want children, we also want to have a life together that’s just not me in bed.”
Women’s pain universally undermined
Dr Anusch Yazdani, a fertility specialist from Eve Health, said endometriosis affects fertility because the build-up of endometrial lining causes damage and scarring to organs.
Haylee’s fallopian tubes are so scarred that her eggs can’t pass through them from her ovaries to her uterus, meaning IVF is the “only way to get pregnant”, she said.
“Because [Haylee] is young, despite all of the disease, she’s likely to have an excellent outcome so I wish her all the best,” Dr Yazdani added.
Haylee said her pain wasn’t taken seriously by a number of doctors, and she was regularly accused of lying about her suffering to access pain medication.
Dr Yazdani said the undermining of women’s pain is a worldwide issue because it is such a personal experience.
“We have no real words to compare pain between different individuals,” he said.
“Whether it’s a male or a female practitioner, women are much less likely to be taken seriously with pain presentations, even in things like chest pain.”
Haylee wants younger women to know that their pain is valid, and they’re not alone.
“So many people like me are experiencing the belittling, being brushed aside, and that our pain is normal.”