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…