Jo lost multiple organs, her fertility and over $100k to disease affecting over one million Aussies

When Joanna Barry was just 10, she experienced a pain so horrific she thought she it would kill her.

Instead it cost her multiple organs, 50cm of her bowel, her fertility, and well over $100,000. The worst part is that she was told it was normal for a decade.

"People find it shocking, but it's not shocking because it's happening every day. There's women getting dismissed or completely just ignored. It's madness," she tells 9honey. 

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If you hadn't already guessed, Barry lives with endometriosis, an incurable disease that affects one in seven Australians born with female reproductive organs (over one million people).

The debilitating condition first reared its head when she was just 10 and her first period arrived unexpectedly during a school camp.

"I thought I was dying. It felt like everything inside me was getting ripped out," she says.

But this was the 1990s and endometriosis was still poorly understood, so doctors assured Barry that what she felt was normal. Eventually, she believed them.

Convinced that she was simply weak, Barry's confidence flagged and her physical symptoms worsened as she got older.

Every month she endured intense cramps, heavy bleeding, brain fog and pain so severe it left her speechless. She dropped out of sport and started missing school.

"Someone should have stepped in and said, 'No, this isn't right, or we need to do something,'" Barry says in hindsight. No one did.

It wasn't until a gynaecologist who agreed to perform investigative surgery on Barry at age 19 that she learned the true cause of all her pain, though doctors downplayed the gravity of an endometriosis diagnosis.

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Surgery revealed a large benign tumour and though doctors removed it, medical conversations were centred around the tumour rather than Barry's endometriosis.

"They just said, 'stay on the pill until you want to get pregnant. It's not that big a deal. Don't worry about it,'" she recalls.

"They never said, 'Don't go on an oestrogen pill, because if you do that, it's basically like putting oil onto a fire and makes the growth worse'. So of course, I went on the wrong pill.'"

Though the pill she took helped control her symptoms for about five years, they eventually returned with a vengeance.

Lethargy, unusual bowel habits and abdominal pain joined the long list of health problems wreaking havoc on Barry's life and it took several more years for her to find a doctor that would take her pain seriously.

When a surgeon finally agreed to open her up in her late 20s, endometrial tissue was strangling her bowels and had engulfed her reproductive organs. 

The surgeon removed as much disease tissue as possible but Barry would require yearly surgery at a cost of about $8,000 just to manage the disease.

And then she tried to start a family.

No one had ever truly explained to Barry how endometriosis can affect fertility, so she was shocked to discover that she'd likely only be able to conceive through IVF.

She and her partner ended up forking out for seven rounds of IVF at between $7,000 to $10,000 each time. It cost them a small fortune but the physical and emotional toll was even greater.

"I got sicker and sicker with each cycle," Barry says.

"All the different hormones you're having to pump into yourself flares up the endo, so I was just a broken person by the end."

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Over three years of IVF treatment, Barry's endometriosis destroyed parts of her bowel and spread to her kidney and ureter. Her organs were severely compromised and the daily pain was indescribable.

A section of her bowel, both fallopian tubes and one ovary had to be surgically removed before she finally made the heartbreaking decision to stop IVF.

By that point her savings were gone, her symptoms were worse than ever, and Barry and her partner simply couldn't afford to keep going financially, physically or emotionally.

"Not being able to have my child, it broke me," she says.

"I think that's the issue with endometriosis, it does feel like a betrayal. It's your own body working against you, and you can't control it no matter what you do."

Not long after, Barry underwent a radical hysterectomy in a last ditch effort to manage her debilitating symptoms.

She was thrown into menopause overnight and is down several organs and over $100,000, but she's feeling better now than she has in years.

The endometriosis isn't gone and Barry still lives with many physical and emotional scars but today she uses them to educate and empower other women so they don't fall victim to the same fate.

Through her business Scarlet Period, Barry advocates for better period care, endometriosis treatment and outcomes for all Australians.

"The more we start talking, the more we can demand better," she says.

She also recently spent three years developing a wearable wireless heat device as a more convenient alternative to heat packs and in scalding hot baths, which she used to rely on for pain relief during endometriosis flares.

"We've got to do better. If this was a male issue I'm sure we'd have the most high-tech things available already, but everyone just keeps going, 'it's just a period'," she says.

Barry heard "it's just a period" for decades – now she knows better and is determined to do better for the next generation.

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