WHEN Michelle Gilmore was warned she might have trouble having kids, she took the news in her stride — she wasn’t even sure she wanted children.

She had no idea that the fertility treatment she was advised to undertake could make her condition worse.

In the end, the Australian designer felt she had little choice but to seek treatment 15,000 kilometres from home, spending $100,000 in total — for a condition about as common among women as asthma or diabetes.

Michelle, from Rozelle in Sydney’s inner west, was diagnosed with endometriosis in mid-2017. She was told a 3.1cm cyst on her left ovary might need to be removed and she should think about freezing her eggs, but she said the warnings stopped there.

“They weren’t overly worried,” the 34-year-old told news.com.au. “They said it’s very common, it’s not that big a deal, if we need to take the cyst out, we’ll do that, it’s quite minor.”

Since the fertility treatment was subsidised on Medicare and her specialist at IVF Australia told her the cyst would probably grow, Michelle decided to go ahead with the egg freezing — just in case.

It was only later she discovered that the process could have made the cyst significantly worse.

“Never was there a conversation about endometriosis spreading to major organs and risk from that,” she said.

Soon after her eggs were frozen, in November 2017, doctors told her the cyst had more than doubled in size to 7.1cm. They wanted to operate immediately.

Michelle was worried. She wasn’t sure she trusted her doctors and was concerned the egg freezing had caused the cyst to grow. She was now suffering terrible pain in her rib cage and torso. After careful research, she asked for an MRI, but was refused.

“I became uncomfortable that they seemed focused on ovarian cancer, not endometriosis,” she said. “The intent seemed to be to eliminate risk of ovarian cancer, not to save my ovaries.

“Removing ovaries is a very significant thing — it can cause problems with temperature regulation and bring on the menopause.”

While visiting New York for work in January 2018, the Sydneysider went to see an expert in the field. He immediately did an MRI and found she had stage 4 endometriosis, and the lesions had spread to her bladder, bowel, rectum, liver and possibly her diaphragm.

He also told her that the best surgery was “excision” involved cutting the cells out at the roots rather than burning them at the top. Only around 100 surgeons in the US could do it — in Australia, it was just one or two.

“I tried to find a surgeon in Australia that could perform the surgery, my GP tried, but I had six weeks before was it was going to shut down my organs,” Michelle said. Your lungs can collapse, major organs can stop working because lesions can block part of them.

“I didn’t have time to get the tests and book in for the surgery. I wasn’t confident given the lack of knowledge or support.

“I found a doctor who was able to not only ensure he had got all the data but had done 3000 surgeries. He doesn't believe in synthetic hormone treatments, he believes in prioritising saving organs.”

That was Dr Tamer Seckin, a world-class surgeon who specialises in endometriosis. The meticulously planned surgery he performed took five-and-a-half hours, with a team removing 53 lesions they found through Michelle’s body, up to her diaphragm and wrapped around her rib cage.

“It was pretty brutal,” she says. “I had good friends of mine fly in from Australia. I had a very good support team but it was painful and confronting.”

Three months later, Michelle is still in some pain and recovering her strength, but says she is “as good as she could be”. She divides her time between New York and Sydney and is learning to manage her condition through a strict anti-inflammatory diet and acupuncture, with regular check-ups.

“Mentally, it’s really challenging to wrap your head around a permanent, chronic, incurable disease, which is what endometriosis is,” she says.

“I’m extremely lucky I’ve got very flexible, supportive business partners and clients.

“I’m very lucky I could put my health first.”

Looking back, she finds the lack of information about the consequences of her IVF treatment “really alarming”, and is worried for the thousands of other Australian women in the same position.

“Once I came to America and got an MRI and started to understand the disease in more detail, I found it shocking I had spent time with and been under the care of medical professionals and didn’t know it could spread to my major organs,” Michelle says.

“When decided to do IVF, I trusted the medical profession. I wouldn’t have done it — I wouldn't have put my life at risk to preserve reproductive options I didn’t know I wanted.”

She says there is “no doubt” the treatment made her condition worse, the only question is, by how much.

“What’s alarming is my IVF was subsidised by Medicare and putting me in danger and I wasn’t aware,” Michelle says. “I’m not saying that’s intentional but we’re privileging reproduction over the risks endometriosis causes.”

Endometriosis affects one in 10 Australian women, but only received $1.2 million funding in the Budget. That’s compared to $14.7 million for asthma in 2016 (which affects 12 per cent of women in Australia) and $64 million for diabetes (which affects 5 per cent of women in Australia.)

“I think the medical profession have a responsibility to ensure they are providing the information needed to make an informed decision, and that’s not what happened in my case,” Michelle says.

“I’m the exception here. I was able to deal with it, I was in a privileged situation. I worry about people that are not that, who don’t question medical professionals.

“The response to my request for an MRI [was], ‘We don’t do that,’ I don’t think that’s good enough.

“I was able to say I’m not comfortable with you operating on me, I’m going to find a world class doctor with access to the best data.

“What would have happened if I had stayed in Australia? I’d probably have had my ovary removed. The other lesions, would they have remained unseen, would the doctor who had only been able to operate on my reproductive organs just have closed me up?

“I’m not angry as much as I wanted to have that conversation with medical professionals about how can you justify putting patients at risk?”

News.com.au has approached IVF Australia and Michelle’s gynaecologist for comment.