This article is a article share from nine.com.au. View the full article here.
A breakthrough in how to treat endometriosis has been made by scientists at the Royal Hospital for Women in Sydney.
Nine may receive a commission when you buy from the links on our site.
Music thumped outside the bathroom door as Kellie Johnson, then 24, lay on the cold tile floor and tried not to pass out.
Agonising period pain had rendered her half-conscious at a party, but it was nothing new.
"A doctor came to my house for my very first period when I was 12 and gave me an injection for pain," the Kosi founder tells 9honey.
Kellie Johnson had debilitating period pain for years without knowing why. (Instagram)
"As I got older, I would almost pass out from the pain. Sometimes I would throw up from the pain … it would make me really overheat and see stars."
These days many of Johnson's symptoms would probably be recognised as red flags for endometriosis, but there was limited awareness of the condition in the '90s and '00s.
Instead, she suffered in silence for a decade until the party incident prompted her to demand answers.
One gynaecologist referral and several scans later, the truth came out: Johnson had severe endometriosis, one of the most painful diseases known to man.
"I had something called an endometrioma, which is like a large chocolate cyst. It was like five centimetres [wide] at the time, so very clearly visible on the scan," she recalls.
Endometriosis symptoms and stats in Australia. (Nine)
She finally had a name for her horror symptoms, but management options were limited to surgery or the contraceptive pill.
"They told me to try not to have surgery because I was 24, and they said that it could damage my egg supply," she says.
"I remember them saying I should have kids soon, but I was 24 and that just was not really in the cards for me at that stage."
So Johnson went on the Pill to mask some of the pain while the endometriosis inside her continued to spread.
Johnson's endo management options were limited to surgery or the contraceptive pill. (Instagram)
It wreaked havoc on her personal life and career, as she often had to take time off because her symptoms were so debilitating.
"I had to work twice as hard as anyone else to prove that I wasn't taking the piss if I couldn't come into the office, or I wasn't on my A game," she says.
"But I can't focus if I feel like my insides are being ripped apart."
"I would almost pass out from the pain. Sometimes I would throw up."
Over-the-counter medication barely helped with the pain and heat packs left Johnson with "so many big red burn patches".
At 35, she underwent a laparoscopy to clear some of the endometrial tissue that riddled her body and doctors warned that if she wanted kids, she had to start trying soon.
"I'd only just started dating my current fiancé and we did fall pregnant by accident within a year of having the surgery, but unfortunately it didn't stick," Johnson says.
Johnson's stomach after surgery to manage her endometriosis. (Instagram)
So began a four-year fertility struggle that saw the couple lose a total of five pregnancies to miscarriage. It broke Johnson's heart.
"I didn't talk about it to anyone for a really long time but when I did, people would say things like, 'Why don't you just adopt?'" she says.
"That's basically saying, 'I don't think you're going to be able to have a child'. I remember feeling really disheartened."
After her fourth miscarriage, Johnson needed something to distract her.
Johnson and her partner suffered five tragic miscarriages. (Instagram)
Fed up with burns from heat packs, she started toying with the idea of designing a new one better suited to manage endometriosis pain.
Johnson often walked around with two heat packs tucked into the front and back of her pants, so she wanted something that would wrap around her and stay up on its own.
"I wanted the heat on my whole torso, I wanted to be able to walk around, so I just started sewing it myself," she adds.
"I didn't really even intend to make it into a business."
She worked on a second-hand sewing machine in her living room, using cheap fabric from Spotlight to create her first few prototypes.
"My fiancé was just so annoyed with rice constantly on the floor."
Johnson worked on perfecting a 360 heat pack for months before realising other women with endometriosis were probably just as desperate as she was for something like it.
In 2022 she decided to turn it into an actual business, with plans to launch the following year.
Then she found out she was pregnant again.
"I had a bleed and cramping in the first trimester, so I took myself to hospital and said, 'I'm having another miscarriage.' I remember just being really broken," she says.
"It's really hard to launch a business and go through something that difficult."
Thankfully it was a false alarm and in September 2023, Johnson and her partner welcomed daughter Lola just a few weeks after Kosi launched.
"It is really hard sometimes to speak up for yourself and say, 'this is what's happening with my body,'" the 40-year-old says, but it shouldn't be.
"Really immerse yourself in the endo community, because they're so helpful. Sharing stories with others who have been through it is probably one of the best things that you can do."
For support following pregnancy and baby loss contact SANDS on 1300 308 307
