12 surgical procedures.
8 emergency visits.
1 visit in ICU.
Endless specialist and doctor visits.
Crippling pain, nausea, blacking out, weight gain and loss, depression.
That’s my experience with endometriosis, a chronic illness that 1 in 10 Aussie women suffer in silence.
What is it? In doctor’s talk, "endometriosis is when the tissue that is similar to the lining of the uterus occurs outside this layer and causes pain and or infertility."
In everyday speak, it’s like spider webs weaving out of your uterus into various parts of the body, gluing your organs together and causing the worst pain ever.
My battle with this illness began in 2000 when I first got my period. There is a strong history of endo in my family - Mum and my auntie's had it, so there was a good chance I’d get it. The monthly visit would leave me in crippling pain, like someone was grating my cervix and stabbing me over and over in my uterus. I’d be nauseous and vomit, I’d black out. The endo overtook my uterus, grew into my bowel; it began to take over my kidneys.
Countless doctors’ visits, scans and tests. It took TWELVE YEARS to get officially diagnosed with this condition following a laparoscopy (that is the only way they can diagnose it). That’s 12 years of pain, missing out on socials events, poking, prodding, and self-doubt. It is so cruel. No one should have to go through this. There is no cure which is why I am drawing attention to this debilitating illness.
It is not just the pain. It emotionally drains you. Getting scans and nothing showing up questions your sanity. Is it all just in my head? Is there nothing wrong? Do I need to just toughen up and put up with it? Will I not be able to have a baby? Will I lose my job because I am sick again? I have been in a very dark place dealing with the emotions of this illness.
The medical costs are huge. Pain killers, medications, alternative medicine like acupuncture and hypnotherapy, specialist appointments, surgery costs, private health cover, it all adds up.
In a group of fellow endo sisters their stories are all too familiar.
Adrienne: "Endo makes me feel completely worthless, and on top of that the way the doctors treat you makes me feel very belittled and I almost don't want to go.. I'm scared to get help."
Emily: "Makes me feel old, tired and not as full of life as I want to be."
Kylie: "Endo makes me feel utterly useless as a woman...my body won't do what it's designed to do, and I have excruciating pain ALL THE TIME. I get belittled and patronised by (mostly male) doctors, and the female ones, while sympathetic, tell me to get pregnant."
Dom: "I hate that it's so unseen. You feel like you can't call in sick because you have pain because no one understands."
I got an email from a mother who is concerned about her 17-year-old daughter. She had endometriosis and her daughter is showing all the signs of having it too. Her daughter is missing out on school and social events because she is in so much pain from her periods. Her friends are even calling her ‘weak’ and teasing, her telling her to ‘harden up’ because it’s ‘just a period’. THIS IS SO WRONG. As someone who has been in a similar scenario, this is soul destroying.
No woman should suffer like this, yet still 10% of us will. It will take on average 7-10 years to diagnose endometriosis and it costs the Australian society $7.7 billion annually with two thirds of these costs attributed to loss in productivity with the remainder, approximately $2.5 billion being direct healthcare costs.
The month of March is all about raising worldwide awareness of endometriosis something I am extremely passionate about. I am a proud ambassador for Endometriosis Australia. They are a nationally accredited charity that endeavours to increase recognition of endometriosis, provide endometriosis education programs, and provide funding for endometriosis research. Please check out their website for lots of useful information. I will be running for team Endo Australia at this year’s Australia Running Festival, with all money raised going towards the charity, if you can spare a dollar please donate. I will run proudly for us all!!
Ladies, if you, a friend, or your daughter is struggling with painful periods this is not normal. Talk to you GP and get the conversation started, because you do not have to suffer in silence. Together, let’s end endo.
Please feel free to get in touch with me @EllieAngel, us Endo Sisters stick together xxx