Let’s put an end to Endo

Posted on 5 March, 2019

“I was diagnosed with Stage 4 endometriosis, the worst you can have. It was growing on my uterus, bowel, ovaries, ureter, it even suffocated my appendix.”

1 in 10 women battle this challenging and debilitating disease. I am that 1 in 10. It is called Endometriosis, or Endo for short. The average diagnosis takes 7-12 years and is reported to cost $7.7 billion annually in Australia due to loss in productivity and healthcare costs.

THERE IS NO CURE.

You are bound to know someone—whether they be in your family, a colleague or a friend who struggles in silence. My Mum had severe endometriosis so the chance of me developing this disease was high, so we now understand that genetics plays a part in developing this disease. Much more research is needed.

So, what is Endometriosis?

It is a condition that causes extreme pain and may lead to infertility. Endometriosis is present when the tissue that is normally present in the lining of the uterus (womb), occurs outside this layer and causes pain and/or infertility. Imagine it’s like spider webs growing inside your body, latching onto various organs, which can cause them to stick together like glue (they call these adhesions). Symptoms include pain before, during or after your period, pain when you go to the bathroom, pain during or after ‘adult time’, nausea, fatigue, anxiety and depression.

Over the years I have had over 10 surgical procedures, a stint in intensive care, countless trips to emergency and doctors’ visits. The only way to diagnose endo is via surgery with a procedure called a laparoscopy. Under general anaesthetic, a specialised gynaecologist (excision specialist) looks inside your abdomen and if there are areas of endometriosis they can excise the lesions or affected areas.

My Endo journey

My endo journey began when I got my first period. I was always in pain and feeling sick. I would go to doctors, have tests and scans, but they could never work out the problem. One doctor suggested it was ‘all in my head’. There’d be days when I couldn’t work due to pain and I’d have anxiety attacks whenever I had to tell my boss I couldn’t come into work.

After 10 years of suffering, I finally saw one of Sydney’s best gynaecologists and had a laparoscopy. I was diagnosed with Stage 4 endometriosis, the worst you can have. It was growing on my uterus, bowel, ovaries, ureter, it even suffocated my appendix. The surgeon described my uterus as a badly bruised apple that will never heal and told me I’d have to eventually have a hysterectomy. They also said, “have a baby ASAP”. At that time, I had just started my dream job and a new relationship! Now at 34, my biological clock is ticking. I would love to start a family with my husband but due to my condition it’s not an easy process. I see my friends on social media sharing photos of babies and it breaks me.

But through this heartache, I keep telling myself that I am feeling good. Through diet, exercise, mindfulness, a healthier lifestyle and acupuncture, I can manage my endometriosis pain. I am lucky and I look for the positives in every day because I know of women who struggle immensely with this disease every day.

I have been privileged to speak to other women and girls due to ongoing awareness-raising over the past few years. Some can’t work or have lost their jobs; some are unable to afford the high ongoing medical costs and like any chronic health condition most will experience anxiety or depression.

How you can help

I am a proud ambassador for Endometriosis Australia. Through a hard-working team of staff and volunteers, we endeavour to increase recognition of endometriosis, provide education programs and help fund endometriosis research.

On Saturday 30 March National EndoMarch High Teas are happening across Australia. I am honoured to be hosting the Canberra event at the Hyatt. The afternoon is all about raising funds for research, education and creating awards for Endometriosis. You will indulge in some of the best High Tea and bubbles in Australia, along with some fantastic raffles and other fun activities. You will hear from the keynote speaker Tanya Hammond.

This year we are having a panel of experts in their fields—Medical Director of Endometriosis Australia, Professor Jason Abbott; Member for Canberra MP Gai Brodtmann; and Melissa Parker who is the researcher and coordinator of Canberra Endometriosis Centre. We would love to see you there as we gather to help End the Silence on Endo. Together we can put an end to Endo.

Grab your tickets from Eventbrite and find out more about Endo at endometriosisaustralia.org.