Endometriosis sufferer slams Marty Sheargold for saying condition is ‘made up’

I am fuming, full of anger and outrage over what Marty Sheargold said about endometriosis before he was axed from Triple M.

By now most of Australia has heard or read the derogatory comments Triple M’s Marty Sheargold made about women’s football.

That was bad. Then it got worse, because the next day he decided to tell Australia live on-air that endometriosis is ‘made up’.

I am fuming, full of anger and outrage because I’ve lived with endometriosis and know the crippling impact it can have. Not only for myself, but for the one in nine Australian women who suffer from endometriosis and the pain associated with it.

That comment took me back to 17 years ago when I was hunched over, vomiting and unable to walk. Every month, since I got my period as a teenager, I feared and experienced the excruciating pain of endometriosis.

Lucy Kokkotas with her daughter Alexia.

When I was 14, I took myself to the doctor because my period pain was crippling, I knew something was wrong and it felt like even my family didn’t believe me. I sat there as a vulnerable child and the doctor laughed in my face, telling me the pain is ‘part of being a woman, you’ll get used to it”.

This was the start of an almost 20-year journey of chronic pain and being overlooked by medical professionals who told me that painful periods are par for the course.

I’m here to tell you, it’s not. It is endometriosis and it is very real.

If I could go back and give younger Lucy advice it would be to advocate for yourself. No matter how many times you’re dismissed, overlooked or told that you’re being dramatic. If your periods are painful, go see a specialist.

It was only when I saw a specialist that I got answers.

At age 28, after trying and failing to get pregnant, I went to see a fertility specialist and I was diagnosed with endometriosis and adenomyosis.

I was relieved, hurt, angry and hopeful.

Marty Sheargold said he thought endometriosis is ‘made up’. Picture: Supplied

Someone had finally acknowledged what I was going through.

I wish I had pushed to see a fertility specialist sooner because over the years of suffering I was self-medicating with painkillers.

The pain was like childbirth, but it was happening to me one to two days every single month.

By the time I was ready to start trying for a baby – I had developed a stomach ulcer from taking too many painkillers to treat my endometriosis pain.

Delaying my journey to motherhood further, so my body could recover.

Endometriosis can make it harder to conceive. If someone had addressed my concerns earlier, I could have been more aware of my condition and had the choice to start trying to conceive sooner.

But through trials and tribulations and lots of tears, I now have the most beautiful gift of all – my baby girl Alexia.

After one cycle of IVF at Adora Fertility in Sydney I fell pregnant right away. I’m thankful to the specialists for understanding what I was dealing with and treating me accordingly. I now have the Mirena, an intra-uterine device (IUD), that means I personally now have zero pain.

Endometriosis is serious business

By Professor Elizabeth Hartland AM, who is the CEO of Hudson Institute of Medical Research

When Marty Sheargold joked that endometriosis is made up, the pain it caused for hundreds of thousands of Australian women was very real.

I felt the collective eye roll of women around the country who are sick and tired of their experiences of pain being dismissed and ridiculed by an attitude that sadly still includes some in the medical profession.

Women with endometriosis consistently report having their pain and other symptoms minimised, being sent away with inadequate treatments like paracetamol and a hot water bottle. They are frequently stereotyped as ‘hysterical’ or ‘melodramatic’.

The fact is that one in nine girls and women – that’s 176 million women worldwide and 560,000 in Australia – have endometriosis. It is a common, chronic inflammatory disease that has no cure.

Professor Elizabeth Hartland says women did a collective eye roll across Australia over the Marty Sheargold endometriosis comments.

It takes an average of seven to 10 years to be diagnosed and the only sure way to diagnose endometriosis is by abdominal surgery. Women have to endure many rounds of surgery because the endometrial lesions that cause pain keep growing back.

Endometriosis causes severe pelvic and back pain, heavy menstrual bleeding, bladder and bowel dysfunction and nausea – every single month. Endometriosis can lead to infertility.

Women who experience pain so severe that they are missing work, school and activities that others take for granted need and deserve proper medical care and dedicated research to improve their lives.

At Hudson Institute of Medical Research, we are working hard to develop less invasive and faster ways to diagnose endometriosis in children and adults. We aim to improve understanding of the disease and develop better treatments to minimise the pain and disruption of this debilitating condition.

For example, we are working on an early diagnostic test, where menstrual fluid can be used – just like a blood test – to detect endometriosis, without the need for surgery.

Our research will not only help the many sufferers of endometriosis but also save enormous costs to the medical system and the economy in lost productivity.

The Prime Minister was right to call out Marty Sheargold for his ill-informed comments. Now both levels of governments need to back the outrage with committed research funding so that endometriosis sufferers in Australia and worldwide get a better deal. The benefits far outweigh the costs.

If we learn one thing from this week’s unfortunate display of ignorance, it is that women deserve to be taken seriously, and so does endometriosis. It’s no laughing matter.

WHAT IS ENDOMETRIOSIS?

Endometriosis occurs when cells similar to those that line the uterus are found in other parts of the body, usually the pelvic cavity. These cells can stick to organs such as the ovaries, fallopian tubes, peritoneal lining, bowel or bladder, where they grow lesions which, even though they are outside the uterus, may bleed during menstruation, causing inflammation, internal bleeding and scar tissue.