Sophie Monk’s quest to have a baby through IVF has taken a dark turn after doctors diagnosed her with endometriosis, an aggressive and debilitating disease that affects about 176 million women globally.

Endometriosis occurs when the lining of the uterus, known as the endometrium, grows on other pelvic organs, causing local inflammation, scarring and adhesions.

Significant pelvic or bowel pain during a woman’s menstrual period are the defining symptoms, but medical experts say that due to a lack of information on the condition, women sometimes think their pain is normal.

In some women, the pain gets to a stage where it interferes with their education, causes relationship breakdowns or prevents them from participating in the workforce, according to Peter Rogers from the Department of Obstetrics and Gynaecology at University of Melbourne.

Severe cases of endometriosis can “destroy people’s lives”, Professor Rogers said.

About 75 per cent of women with endometriosis suffer with pelvic pain and painful periods, according to women’s health organisation Jean Hailes, while a small affected minority have no symptoms.

For Monk, the disease went undiagnosed until she started the egg-freezing process at Monash IVF.

Taking to Instagram to share her diagnosis, the 38-year-old media personality advised women who exhibit symptoms to see their GP.

“So many women live not knowing they have endometriosis. If you have annoying cycles. You should ask your doctor,” she wrote on social media platform Instagram.

According to her Instagram story, Sophie Monk’s doctor found “some endometriosis, but not a lot”. Photo: Instagram

From diagnosis to treatment

Jean Hailes’ researchers say about a third of women become aware they have the disease after struggling to get pregnant and trying for IVF, or during an unrelated operation.

Professor Rogers said the only method of confirming a diagnosis of endometriosis was by a laparoscopy – a surgical operation that he said was a difficult decision for many women.

Professor Rogers said clinical researchers were still trying to develop new diagnostic approaches to prevent the need for surgery.

He said there were “not enough” treatments on offer for endometriosis sufferers, who were often required to undergo repeated surgery.

“They end up getting to this cycle of having surgery every two or three years and that’s not really acceptable,” he said.

Progestins and contraceptives can also be used to stop the endometrium from growing or receding, he said.

“The issue is that there are approaches that work for probably the majority of women but that still leaves a significant minority for which there isn’t suitable treatment,” Professor Rogers said.

“That’s really the challenge that needs to be addressed by medical research to find solutions for the women that we currently don’t have.”