I went in for a colonoscopy on my 39th birthday. I had been fatigued, at times overwhelmingly, for almost two years. I knew I was severely anaemic but assumed it was because of my heavy periods that had come at short intervals most of my life and had been telling my GP that this was the cause.
After a failed attempt with an IUD to stop my bleeding my GP tried to give me an iron transfusion but couldn’t get the vein - this was the first of many “lucky” strokes. She had to refer me to a Haematologist to get the transfusion done.
The Haematologist asked a bunch of questions that I thought nothing of at the time. She got me to detail how my grandpa had died of bowel cancer, my mum had had a resection for a pre-cancerous condition, and I experienced occasional bleeding with bowel movements as well as irregularities that I put down to undiagnosed food intolerances. I thought nothing of these factors.
She told me she didn’t want to do the transfusion on the spot because it would be cheaper to do it bundled with a colonoscopy; we could get to the bottom of these other digestive issues at the same time. In retrospect, this was a benevolent lie and I’m grateful for it.
Because I had the means I paid to have a private colonoscopy and transfusion in February 2020 rather than waiting the then “months” in the public system. When I woke up, I was told I had a 7cm polyp and that “not all polyps are cancer, but all cancers start out of polyps”. The polyp was in a weird position, so I’d have to come back in a few weeks to get it removed. It was a Friday afternoon, and I was exhausted so I ate my sandwich, left the hospital and thought nothing more of it.
The following Monday afternoon I got a call asking me to come see the Gastroenterologist at 5pm. My oblivion was snatched away in an instant - I knew what I was about to be told. I managed to message my partner and a dear friend who was free to go with me to the appointment. I’ll always be thankful for the unquestioning support I received that afternoon.
The next few hours and days were like living in a dream. In retrospect, I should have asked more questions or taken someone with me to the subsequent scans and consultations, but I was in shock and couldn’t make rational decisions. I clung to the good news - it hadn’t spread to other organs and my surgery was likely quite small.
Then I was told the tumour itself was a “bad” grading, so they’d need to either take a sizeable chunk from my bowel or do chemo regardless of the labs from my lymph nodes, so I just said cut out as much as needed without asking about the consequences.
When I woke up after my surgery I was terrified. I’d been under for almost 10 hours due to complications from undiagnosed Stage 4 endometriosis - my pelvic organs, including my bowel, were fused together with adhesions. It was 2am, I had no visitors and was scared. I couldn’t move but looked down to see I was completely soaked in blood.
It took several days to be able to sit up and the pain was incredible in that first week. However, the speed of my initial recovery amazed me and after two weeks I could shuffle around without a walker so was sent home. While my lymph nodes had been full of endometriosis cells they were clear of cancer so I was officially done with treatment.
Again, I felt lucky. COVID-19 had reached our shores and I knew it was a bad time to have a compromised immune system from chemo.
But my positive mindset left me completely unprepared for the physical and emotional side effects of what I’d been through, and as Melbourne locked down just a week after going home my world became incredibly dark. I couldn’t go for walks because of incontinence, I was experiencing chronic pain, anger and confusion from the sudden diagnoses of multiple conditions and friends I had once considered dear disappeared as they dealt with their own struggles.
I was put into chemical menopause to suppress the endo-related pain and bleeding. It was not pretty. I felt guilty for falling apart when I had it so easy compared to others, and I grieved for the recovery and return to normalcy that the pandemic took from me. It was seven months until the despair slowly started to shift and let me regain some sense of self.
It’s two years on now. I never went back to the office to pick up my good lunch box left behind that Monday, and I still struggle with continence sometimes. I never reconnected with certain friends, and I constantly worry that my next scan will be the end my lucky run. I’ve become far more introverted and find it hard to spend time with people who weren’t there during those dark months. When I do see other people and they ask me how I’m doing I can now genuinely say “good”, but the more honest answer is “good, but not like person I once was”.
I’ve decided to share my story because my positive outcome is a result of privilege and luck, nothing more. Given the timing, my ability to pay for a private colonoscopy may have saved my life. The public wait lists that were too long before COVID are beyond dangerous now - we need to do all we can to uncouple health outcomes from income. And we need to do more to change the culture around accepting pain and conditions like anaemia as “normal” in people who menstruate.
GPs need the resources and training to seek out underlying causes and not just prescribe contraception and send people on their way. Our bodies and lives are too precious and complex to be assessed and treated in 10-minute increments, if you’ve got the money for it.