Inspiring Newtown mum raises awareness for endometriosis, infertility

Newtown’s Simone Grace had struggled for half her life with endometriosis before an unthinkable tragedy struck.

Newtown’s Simone Grace was confronted with a devastating tragedy after she had already been dealt a lengthy battle with endometriosis.

After meeting her husband when she was 36 years old, they decided to start the journey to becoming parents.

She initially tried to conceive naturally before doing 14 rounds of IVF, after being told endometriosis had impacted her fertility.

Ms Grace then went on to have her fallopian tubes removed in a laparoscopic surgery and was told to consider donor eggs.

She and her husband went to South Africa for IVF in 2016, where a woman had donated her eggs.

Ms Grace fell pregnant with twins.

But tragically, her waters broke at 21 weeks.

Edward and Harry were born two weeks later and died on the same day.

Ms Grace was told she had an incompetent cervix – which was not related to the endometriosis.

She first began experiencing symptoms of endometriosis when she was a teenager and had severe pain every time she got her period.

Simone Grace with her daugher Claudia McNamara are promoting the Walk the World 4 Endo event on Sunday October 2 at Eastern Gardens. Picture: Alan Barber

Now 45, Ms Grace said she visited multiple doctors from the age of 15 but did not receive an endometriosis diagnosis until she was in her mid 30s, after wrongly being told many times she probably had irritable bowel syndrome.

It can take on average six and a half years to be diagnosed with endometriosis.

“It’s really good people are getting diagnosed quicker (now) but it’s still a number of years,” Ms Grace said.

Endometriosis is a common disease where tissue similar to the lining of the womb grows outside it in other parts of the body, according to Endometriosis Australia.

More than 830,000 (more than 11 per cent) of Australian women, girls, and those who are gender diverse suffer from endometriosis at some point in their life with the disease often starting in teenagers, according to the group.

The condition can cause pelvic pain and impact fertility.

Since her diagnosis, Ms Grace has had four laparoscopic surgeries.

While painful, they help her later feel more comfortable.

She said while her symptoms have stabilised, “you just don’t know what’s around the corner”.

Endometriosis and fertility issues have had wide ranging impacts on Ms Grace’s life: she said it had been expensive, she had been forced to miss work and she had to turn down jobs.

After the tragedy of losing her twin boys, Ms Grace is now mum to four year old Claudia, after she was able to have her cervix operated on and conceive using donor eggs.

Ms Grace said dealing with fertility issues on top of endometriosis had been “devastating”.

“Obviously I wanted to use my own eggs,” she said.

“By the time I got to the stage they said just use donor eggs it was almost a relief.

“But I wouldn’t have it any other way — I’ve had beautiful twins and Claudia.”

She described her experience as a rollercoaster.

“It’s been a tough journey but it’s made me who I am and you’ve got to count your blessings.”

Ms Grace, a lawyer, is on a mission to help raise awareness around endometriosis and infertility.

“I wish I’d been taught about fertility at school,” she said.

She has joined the Geelong based Endo Help Foundation, which is led by a team of volunteers who are passionate, dedicated and determined to educate and empower all those living with endometriosis, pelvic pain and period pain, as a board member.

She joined about 18 months ago after being connected with Geelong psychologist and foundation director Katherine Stanley, through a friend.

“It’s wonderful being able to advocate for and empower people with endo,” Ms Grace said.

The foundation’s initiative, the Walk The World 4 Endo event, is a virtual month long walk in October, raising money and awareness for those living with endometriosis.

Last year’s event raised $42,000 which funded two research projects at Deakin University, and the foundation is hoping to top that amount this year.

This year, there will also be an in-person walk event at Eastern Park, Geelong at 10.30am on Sunday, October 2.

There will be live music, a coffee van and endo themed cupcakes.

For more information visit endohelp.com.au/walktheworld4endo/

Originally published as Inspiring Newtown mum raises awareness for endometriosis, infertility