Maddie Richards speaks amid Endometriosis Awareness Month

A young Geelong woman has told of her fertility fears and excruciating pain caused by a disease that affects one in 10 women.

Maddie Richards has endometriosis. Picture: Alan Barber

Maddie Richards never leaves her home without pain relief and has taken work calls in agony on the office floor due to endometriosis.

The 26-year-old was diagnosed with the disease, which sees tissue similar to the lining of the uterus grows outside the organ, in 2019.

While she had experienced irregular periods in her teenage years, it was not until she went off the contraceptive pill in 2018 that she began experiencing intense pain.

The East Geelong resident went back on the pill before trying to go off it again, but wound up in the emergency room in “excruciating pain” within days.

An ultrasound a year earlier had failed to detect endometriosis and she was tested for a number of conditions after the emergency room visit, she said.

Eventually she went to a specialist and was diagnosed with stage four endometriosis.

The disease has had a “range of impacts” on Ms Richards, who was put back on the pill but still experiences intense flare-ups.

“Sometimes I feel my stomach is full of glass,” she said.

March is Endometriosis Awareness Month, and Ms Richards, who has felt dismissed by medical professionals, said patients needed to be taken seriously.

According to the World Health Organisation (WHO), endometriosis is a chronic disease associated with severe pain during periods, sexual intercourse, bowel movements and/or urination, chronic pelvic pain, abdominal bloating, nausea and fatigue.

It is also sometimes linked to depression, anxiety, and infertility.

Endometriosis affects about 10 per cent of reproductive age women and girls globally.

Ms Richards said uncertainty around fertility was “really hard” and “really scary”.

She has had multiple keyhole surgeries and a range of hormonal treatments for endometriosis, and also saw a pelvic physiotherapist in Geelong which she found helpful.

“I learnt a lot,” she said.

She said there needed to be more interdisciplinary care for endometriosis patients, who experienced years of trauma and pain.

Associate Professor Helena Frawley. Picture: Supplied

Associate Professor Helena Frawley, director of allied health research at the Royal Women’s Hospital, is part of a project investigating the role pelvic floor muscles play in persistent pelvic pain, and other problems women experience related to endometriosis.

“Many women with endometriosis experience persistent pelvic pain,” Prof Frawley, a physiotherapy researcher, said.

“We want to find out whether their pelvic pain is related to their pelvic floor muscles, whether the muscles are tender or tense, and how well they contract and relax.

“We will see women just before they have surgery to investigate their pelvic pain, and at three and 12 months after their surgery, and this will tell us how the pelvic floor problems respond to the surgery, what improves and what doesn’t.

“These findings will help us design and test new therapies that target the pelvic floor, that we hope will give women additional relief.”

She said if a woman was diagnosed with endometriosis, non-drug and non-surgical treatments were often overlooked.

Originally published as Maddie Richards speaks amid Endometriosis Awareness Month