One in ten women battle endometriosis, or endo for short, a challenging and debilitating disease. The average diagnosis takes 7-12 years and it costs Australia $7.7 billion annually in lost productivity and healthcare costs.
I am that one in ten. There is no cure.
Endometriosis happens when the tissue that is normally present in the lining of the uterus (womb), occurs outside this layer. Imagine it’s like a spider web growing inside your body, latching onto various organs, and causing them to stick together like glue (these are called 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. It can also cause infertility.
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. We now understand that genetics plays a part in its development and much more research is needed.
Over the years I have had more than ten 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 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 ten years of suffering, I finally saw one of Sydney’s best gynaecologists and had a laparoscopy. I was diagnosed with Stage Four endometriosis, the worst you can have. It was growing on my uterus, bowel, ovaries, urethra and 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. I was also told to “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 endometriosis means 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 as with any chronic health condition, most will experience anxiety or depression.
I am proud to work with Endometriosis Australia. Through a hard-working team of staff and volunteers, we endeavour to increase recognition of endometriosis, provide education programs and help fund 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 the best high tea and bubbles in Australia, along with some fantastic raffles and other fun activities. You will hear from keynote speaker Tanya Hammond and 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 here.
Find out for information about Endometriosis Australia: https://www.endometriosisaustralia.org/
Ellie Angel-Mobbs is a radio presenter on Sydney station 2DayFM, a Canberran born and bred and an ambassador for Endometriosis Australia.