Kween Krush alert!! This is where we celebrate everyday women for being complete badass Wonder Women.
Ellie, we have a crush on you because you have over-come challenges that have defeated many, you also continue to face these challenges head-on daily while keeping a kick-ass radio job, being a wife, friend and sister/warrior to the endometriosis community.
So firstly, what is endometriosis?
It’s a condition that affects 1 in 10 women, creates extreme pain and can lead to infertility. In doc speak – endometriosis is when the tissue similar to the lining of the uterus occurs outside this layer and causes pain and/or infertility. There is no cure. In normal speak – it hurts.
What’s your story/experience with endometriosis? When did you first find out you had it?
When I was 15 I got my first period. I vividly remember getting it and thinking “Oh shit, Mrs Martin taught us about this in Sex Ed noooooo, does this mean I have to grow up now? I don’t want it!!” I was so embarrassed that I didn’t want to tell my Mum but she knew something was wrong. I was acting unusually quiet and kept asking for paracetamol. She eventually said “Ellie, have you got your period?”. I burst into tears. My mum’s a nurse and at the time a mid-wife, so she knew everything when it came to lady issues. She told me that she had this thing called endometriosis and that it made her very sick when she was young. It eventually led her to have a hysterectomy in her early 30s which is ridiculously young to be going through menopause. It can be hereditary and that there is a high chance I would have it (JOY!!!!!). I went onto having painful periods throughout my teens and the doctor put me on the pill when I was 17. It brought me no relief.
When I was 26, I woke up one morning feeling a bit off. I felt this sharp stabbing pain in my lower stomach. I laid on the bed in the foetal position to ease it, and 2 minutes later I couldn’t move. The pain was so intense. My husband raced home and took me to the emergency doctor. 15 minutes later I was on standby for surgery. They thought my appendix was about to blow, so they rushed me in for a CT scan. What they found was a surprise. Cysts on my ovaries and all signs pointing to endometriosis.
Within weeks I was seeing one of Sydney’s best gynaecologists and having a laproscopy. That’s key hole surgery where they look around your abdomen and fossick to see what jewels they can find. My body was a gold mine: stage 4 endometriosis, the worst you can have. It was growing everywhere – uterus, bowel, ovaries, kidney, it even suffocated my poor little appendix. They also discovered I have a condition called adenomyosis, where the endo tissue grows into the wall of my uterus. And that little sucker hurts! My surgeon described it as a badly bruised apple that will never heal and told me I’d have to have a hysterectomy soon. They also said “Have a baby ASAP”. Sure, because making a baby is as easy as cooking 2 minute noodles!! Since then I’ve had over 10 surgical procedures, and numerous hospital visits and days waiting in doctor’s rooms. It just has become the norm. At the moment though, I’m feeling on top of it and can manage the pain.
Considering there wasn’t as much awareness about it back then as there is now (thanks to Kweens like yourself), how did you become more informed about it?
Not only did my Mum have it, but so did her sisters. There is a very strong link in families with Endo. Mum is so clued on with the medical stuff (she should be a doctor) and therefore I have had extensive knowledge as to how it works and how to best treat it. Endometriosis Australia do a fantastic job educating on it as well. I highly recommend checking out their site.
How did endo change your world? And was it a hard at first to get through your day-to-day life?
It took a toll on my work, social life and mental health. At first diagnosis I had days in really bad places, but I started seeing a professional who really helped me get back on track. A healthy lifestyle with regular exericse and a good diet have a big impact on it. My husband is my rock and my world, he has held my hand through everything. He will do anything to help me, as will my family. I am very lucky.
What exactly is a ‘day in the life’ of someone who has endo?
On a day when the pain is extremely bad, (think of it like someone is grating your cervix, stabbing your uterus with a rough knife or rocks stuck in your bowel) you will spend it in bed, cuddling a hot water bottle and taking whatever you can to stop the pain. Then again some days, not even the hardcore pain killers will touch the sides.
What frightens you the most about Endo? And what do people still not know about it?
Mental health is a huge one. Recently, I met an endo warrior who just got out of hospital because the pain was too much and she tried to end her life. I heard of one man who lost his sister to suicide after she could not take the endo anymore. Women are killing themselves because of this disease. If you are feeling this way please call Lifeline on 13 11 14, they are amazing. The cost it has on workplaces is staggering. In Australia, each year, endometriosis is estimated to cost $7.7 billion in lost productivity and $2.5 billion in Medicare and direct healthcare costs. I have taken a lot of days off during my initial diagnosis period and post surgeries. In the beginning I felt so guilty every time I was unable to work, but I’m teaching my brain to leave behind the guilt and just focus on getting better.
Who are the #endosisters and #endowarriors?
Endo sisters and warriors are those who are battling the illness, it’s a beautiful community (especially on instagram) that share their stories and support one another. It’s nice to be able to chat to others going through a similar experience because we all understand what it’s like. It’s also fantastic to see so many celebraties talking openly about their experiences, like Lena Dunham and Halsey. When you see them posting about not being able to work and being stuck in bed, it is almost reassuring that it can affect anyone.
Tell us about the exciting announcement that happened on the 6th of December 2017?
I was invited to Parliament House for the official launch of the Parliamentary Friends of Endometriosis Awareness, hosted by Gai Brodtmann MP and Nicole Flint Member for Boothby.
These two amazing women have partnered together with the newly formed ACE team (Australian Coalition Of Endometriosis) which is made up of many of the Endometriosis partners in Australia including Endometriosis Australia, Endo Active, QENDO – Endometriosis Association (Qld) Inc, Pelvic Pain Foundation of Australia and Canberra Endometriosis Network.
As an endo warrior, I told my story of pain, surgeries and mental health. For over a decade I have battled this illness and for some reason it really got me that day. I cried during my speech. I was so proud to be standing in front of a powerful group of women, politicians and my Mum and Dad. The Federal Government announced three policies aimed at ending the silence on endometriosis. The average diagnosis time for a woman is 7 years. Just imagine a world where this is drastically shortened, and where this endo thing is just a thing of the past!
Addressing the crowd was Health Minister Greg Hunt MP saying that this chronic women’s health condition should have been given more attention earlier and outlined the Federal Government will now:
• Develop a National action plan for endometriosis. This includes more understanding in workplace scenarios, Medicare rebates and education.
• Fund endometriosis research into diagnosis and treatment at the The University of Queensland – UQ
• Partner with Jean Hailes for Women’s Health to make endometriosis the focus of the next Women’s Health Week.
Bravo! So what’s next in fighting endo? What does the future look like?
On New Year’s Day I was watching the news and a report showed that a research lab in Melbourne may have made a break through. Scientists discovered a new way to find a crucial stem cell in the lining of the womb. With further investigation this could help relieve pain and eventually lead to a cause and cure for it. The future is also about raising awareness (especially in young women) about the symptons of endo. Getting this education into schools would be a huge as well! If girls are educated that it’s not normal to be in so much pain from a period, this can lead to earlier diagnosis.
What do you want to say to anyone who is struggling with endo right now?
Be kind to yourself and know that there is support out there. I think the worst thing about having a chronic illness is just feeling like you are alone and no one understands. But there are people you can talk to. Also if you feel like you are not getting the answers from your GP then seek a second opinion. Some doctors just have no idea about the illness. I am always here for a chat, and to vent about endo. Get in touch @EllieAngel on Twitter. Check out endometriosisaustralia.org for more info, and get involved with their High Teas happening around Australia in March. All money raised goes to endo awareness and research.
Ellie and Carmela randomly met one night through a mutual friend at a radio station in Perth (it was one of those wonderfully drunken cosmic things). It wasn’t long after, that they both got jobs in Sydney and were battling it out hosting different radio shows at the same time. Carmela always admired the shit out of Ellie’s sweet sweet skills and hopes one day hopes to be as slick and cool as her.