Most days the pain is overwhelming.
It ricochets through Kaitlyn Goodsell’s body leaving her unable to move, helpless.
On other days, the pain is less, but it’s always there and so is the knowledge she might never be able to have children.
And Kaitlyn is not alone.
One in 10 Australian women have endometriosis, but many suffer for years without a diagnosis.
“It feels like there’s something inside me that’s hot and sharp – and trying to claw its way out,” Kaitlyn says.
“I have pain all the time, even when it’s not horrible there’s still pain.
“It’s hard – it’s hard every day.”
Endometriosis is a condition where the tissue which lines the womb forms deposits outside the uterus, commonly on or near the Fallopian tubes, ovaries, bowel or abdomen.
At 15, Kaitlyn was told she might never be able to have children.
Tissue growth and surgeries related to endometriosis can cause internal damage and a higher risk of miscarriage.
She says at 15 she wasn’t too phased by the diagnosis – but as she ages the reality takes on a new pain.
“Now that I’m 23 being told I might be unable to have kids is really scary,” she says.
“The choice is being taken away – that is what makes it really hard.”
Beechworth doctor and Murray Primary Health Network North East regional medical adviser, Wendy Connor, says most women think pain is just part of a period.
She says endometriosis is often most painful during ovulation and menstruation.
“It’s OK to feel discomfort during your period but significant pain with a period is not normal,” she says.
“The tissue changes during the menstrual cycle and when a period comes it is shed.
“But when the tissue is in other spots of the body the blood can’t come out, which causes pain, discomfort and scarring.”
Kaitlyn was diagnosed with endometriosis, or endo, when she was 15.
She asked doctors to test for the condition because it ran in her family.
Hers is one of the rare cases where the disease is caught early.
Many women remain unaware they have the condition for years.
“I didn’t even know how to spell it before I had it,” Kaitlyn says.
“People don’t know about it.”
Kaitlyn says many people don’t understand how sick she is.
“If I looked sick every day people would understand but when you don’t look sick it’s really hard,” she says.
“I tried to get centrelink in the past but I couldn’t get money even though I couldn’t walk because people don’t know what it is.
“If my work wasn’t understanding, if I worked somewhere else – they would have sacked me, I wouldn’t have a job.”
Dr Connor says despite the severe pain, bleeding and possibility of infertility, most women are not diagnosed until seven or 10 years after symptoms begin.
“It doesn’t have a high profile and is under-diagnosed,” she says.
“Part of the reason for that is one treatment for painful periods is to go on the oral contraceptive pill.
“A lot of women for one reason or another go on the pill and the opportunity to diagnose is missed, as symptoms are controlled.
“Then it’s not for years until they go off the pill, then symptoms and pain returns.”
Financially and emotionally, the condition has exhausted Kaitlyn and her partner Jamie.
“We’ve put off a lot of things because we can’t afford it, I can’t help but blame myself, it’s my body,” she says.
“Mentally the toll is huge, you don’t even realise but it makes you anxious and some days I feel quite depressed.
“It doesn’t really get easier, it’s hard to go through it over and over again.
“I’m an independent person and it’s really hard to depend on someone so completely.
“Jamie’s amazing but it’s still hard.”
For Jamie, seeing the woman he loves in constant pain is extremely difficult.
He spends most days dreading the familiar call informing him Kaitlyn has collapsed.
“If it’s Kaitlyn ringing I know she’s OK but a couple of times it’s been a colleague and that’s hard, you just don’t know,” he says.
Just over a year ago Kaitlyn discovered endometriosis had spread to her bowels.
“The pain is horrendous, eating is a nightmare, I have a lot of acid reflux so I vomit everyday – you just get used to it,” she says.
“When it’s bad I can’t move.
“I get sore from laying down so much but walking is worse when you risk passing out.
“It makes normal everyday things hard – being 23 I can’t do everything everyone else is doing.”
No cure exists for the condition but practitioners like Dr Connor believe early intervention is vital.
“We think early management means a reduced chance of complications with things like fertility,” she says.
“There’s a real value in early diagnosis. It also means management and reduced pain, boosting quality of life.”
Kaitlyn and Jamie say they could not believe the community support they received after setting up a gofundme page to raise money for Kaitlyn’s latest surgery.
Jamie created the page to help fund Kaitlyn’s treatment but also to raise awareness of the condition.
Despite everything, Kaitlyn considers herself lucky – at least she knows what is causing her pain.
“It’s crazy to think how many women are in pain and people are just telling them to suck it up,” she says.
“Women are just told it’s period pain and you have to get used to it.”