If you’re suffering from Endometriosis or experiencing symptoms, always seek medical advice from your doctor for diagnosis and treatment options.
I had the dream job. Girls all over Australia would kill to have my position. I’d just earned my first internship at Mamamia and best of all I was getting to work with my cousin Mia [Freedman], who I’d always looked up to. I felt so grown up, so motivated and I loved working in an office full of smart, sassy women.
A couple of weeks later, all of that was about to change. I had a specialist appointment and I was completely unprepared for what he was about to tell me. “I think you have endometriosis. It’s quite a common disease but it can affect your fertility. I’d like to book you in for surgery.”
Surgery? What for? I’d never even heard of endometriosis. “Go home and Google it,” he told me. I wish he hadn’t.
It turns out the chronic UTIs and pelvic pain, the excruciating period pain, the nausea, the random bleeding, the crippling fatigue and the horrendous digestive disorders I’d learned to live with over the years were all linked together.
When I came out of the appointment I was confused and still in shock that I’d walked in for a routine check-up and walked out with a date scheduled for surgery. Still, my doctor told me it would be minor day surgery and I’d only need a few days off work.
The surgery lasted four hours and I was in hospital for four days. I didn’t go back to work for two weeks and even then, it was way too soon. The level of pain and illness I’d learned to cope with before the surgery was nothing compared to what it was like afterwards.
I did my best to put on a brave face but sitting in an office chair for eight hours was killing me. Even 20 minutes was too much. The abdominal pain and the bloating became so severe that I couldn’t wear tight jeans anymore.
Every day I’d wake up looking six months pregnant which was cruel considering I’d been told I may never be able to have children. The pressure on my bladder and bowels was unbelievable.
I’d often come into work feeling OK but suddenly get a UTI and within seconds I’d be weeing blood and close to passing out.
“Sorry everyone, I’ve gotta leave early. I’m not feeling well.” I could tell what they were thinking: It’s been weeks since her operation. She looks fine. What's going on?
This happened again and again. One morning I grabbed a bircher museli on my way into the office and scoffed it before our first meeting.
My body couldn’t digest the gluten (I had no idea gluten was even a thing at this stage) and within 15 minutes I was throwing up relentlessly in the bathroom as quietly as I possibly could. I was home before lunchtime.
The week after that we had a really important meeting. I was so bloated I could barely breathe. I sat in that meeting feeling like I was a pressure cooker about to explode if my valve didn’t release some steam. Of course by "valve" and "steam" I mean I really needed to fart.
Not just a small fart. Not just one either. Not the subtle, quiet fart that you can gently let go if you simultaneously cock one ass cheek, shuffle in your seat and clear your throat. Oh no, I needed to fart every five minutes. At home. Alone.
It’s funny that I’m sharing this with you all now but at the time I was too embarrassed to tell anyone the truth about why I needed to go home early AGAIN. Even I wouldn’t believe me!
It was just one thing after another. I could tell that I was becoming unpopular for what I’m sure was perceived as poor work ethic. It couldn’t have been further from the truth but I was sick so often that I knew how it looked.
Eventually I was let go. Worse still, let go by my big cousin. The woman I had idolised since I was a toddler and who I so badly wanted to impress. I was chronically ill with a mysterious disease that nobody had heard of and now I’d lost the one thing that was so important to me.
Two years later I’d had a second surgery for Endo and had to stop working all together. I was in pain every single day. I felt like my life had been ripped away from me by this horrible disease and still I had no real information on what was the cause or what I could to manage my pain.
Fed up by the lack of information and driven by the thought of millions of other girls going through the same trauma as me, my Mum and I started EndoActive – a not for profit charity raising awareness of endometriosis. One in 10 women have endo. I’m sure some of the women in your lives have been affected by this disease and yet most people have never heard of it. We want to change that.
We want women living with Endo and their families to have the best possible information. And that is why we held a conference in May this year with 13 top specialists in Australia presenting the most current findings on how to manage this disease.
Very bravely, my cousin Mia presented at our conference. It made everyone realise the devastating implications that chronic illness can have on your career. Her honesty was admirable and there wasn’t a dry eye in the house.
I’m pleased to report that I have been pain-free all year. I’m now studying my Masters in Health Communication at Sydney Uni and working on EndoActive in my spare time. I feel amazing - better than I have in years and that is thanks to information.
Mamamia's Endo Awareness Week, curated by Founder of EndoActive Syl Freedman, shines a light on a disease suffered by one in 10 Australian women. To read more from Endo Awareness Week, click here. If you'd like to find out more information on Endometriosis, Syl's story or Endo Active, visit endoactive.org.au and keep up to date on their Facebook page.