I will never forget my doctor walking into my hospital room with the photos of my insides. He couldn’t believe I had been walking around with this spider web of disease in every possible place imaginable and all I could feel was relief. I finally had proof I wasn’t crazy. I finally had proof my pain had been real. That was when I was 21.
I was first diagnosed with endometriosis when I was 17 years old. I had collapsed on the floor in the kitchen in pain. I was rushed to hospital for an emergency appendix removal, until they found out it was endometriosis instead. I was given a pamphlet and told that he had got it all and I should now be fine. That wasn’t the beginning of my nightmare though. I had spent countless sick days off school and uni during my period, because it was just so painful. I assumed it was normal and once a month I just needed to stay in bed, but eventually even after the first surgery things started to get worse.
By the time I was 20 I could hardly walk without pain. Now a teacher, I had to lie down on the classroom floor at lunch time just to get enough energy to get through the rest of the school day. I Then I would go home and sleep from 5pm til the next day. I had surgery after surgery with no explanation as to why. They knew I had previously had endometriosis but no one could find it, they thought I was crazy.
Luckily I found a surgeon willing to operate on me one more time. I wasn’t giving up on my once active and outgoing lifestyle. This surgeon found a pocket inside me that had folded up and over every part of my endometriosis so it was hidden. When he found this, he didn’t operate, it was too advanced for him. I was then referred to a professor in Sydney.
He advised me at 20 I was unlikely to ever have children and that I might also have to have a colostomy bag as the endometriosis had grown onto my bowel. This wasn’t great news for someone who had already had her heart set on children.
After this surgery with the professor it was a long recovery. But life eventually went back to normal. I married and blissfully ignored the warnings of not being able to have children. It was after a year and a half of trying I realised I should see a doctor. He offered to clean up the endometriosis that might be hindering the process and so I agreed. A few months later, I was pregnant. My doctor couldn’t believe it but then told me to have as many kids as I wanted as quickly as possible. So we had three beautiful daughters.
Listen: How Sylvia Freedman turned her endometriosis diagnosis into something far more important. Post continues after audio…
During this time I created my own children’s swimwear label as a way to support myself. I could work from home and from my hospital bed or bed at home when things got hard. Full time employment seemed impossible to me now, as endometriosis consistently plagued me.
I was suffering the same issues I suffered before but higher up. I could feel the pain but no surgeon could see it. I was like deja vu all over again. Initially they thought it was stomach issues and I had lots of test, then they thought it was my gallbladder so they took that out. Nothing helped. In the end I was referred to a psychologist. I was asked how my home life was. No one believed my pain.
Being a bit older and more stubborn I had to change doctors a few times until I found one who believed me. It appeared the endometriosis had started growing in areas outside my lower regions. It was now on my liver and diaphragm and suspected in the lungs. My doctor believed me but wouldn’t do the surgery. So they put me on medical induced menopause, twice, once by nasal spray and one by a giant needle. Both times did help me to live a relatively normal life but only for the few months I was allowed to use it. The problem and pain always came back after treatment ended.
I finally found a surgeon who took enough pity on me to take one more look. He operated and found on the upside of my liver endometriosis. He also suspected it was on the other side of the diaphragm but that is a much larger complicated and dangerous surgery. After he unstuck my liver from my diaphragm and burnt away the endo up there. I felt like a different person. But it only lasted a little while. The pain from the other side still continues. When it is my period time, it feels like I am breathing broken glass. To laugh, to cough is super painful. I have had to put my running on hold and slow down my physical activity.
I write this as I sit in my bed. Running my international brand, warehouse and staff from my laptop and phone. I will not give up. I have decided the next step is the surgery I have been dreading. But I am ready for a short time to have my life back.
What is so super important to me, is that there is more awareness out in the world for this disease. My three beautiful daughters might end up with this hideous chronic illness. One in ten women have this disease and yet little is known about it. I am a proud Endometriosis Australia Champion. My goal is to show women with my disease it isn’t what you can’t do that matters it is what you can do.
For more information about endometriosis go to endometriosisaustrlaia.org.
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