What It Cost Me: More Than Money
By Katie Wilson
This month at QENDO we’ve been shining a light on some of the costs associated with having endometriosis, because it’s something we just don’t talk about enough. What about when endometriosis costs you more than those financial costs? Katie Wilson shares about just this in today’s blog, which explores her journey with endometriosis and chronic pain from a young age, and the barriers she has faced as a result. Endometriosis can be undoubtedly expensive, but money is just the beginning of what it may cost us.
I remember episodes of pain starting from as young as 4 years old. While other kids were dealing with their skinned knees and falling off bikes (I had my fair share of those too) I was experiencing something I found out much later wasn’t normal.
The month before my first period is when I had what I now refer to as my first flare. I was 12 years old.
Each period got worse and worse but I still thought it was normal. Through my teen years I tried to find a GP who would listen to me as I was starting to get that feeling something wasn’t right. I was becoming so overwhelmed by my pelvic symptoms that I started to self-harm as a way of coping. I was promptly told by the GP to “cut it out and grow up. All women have to deal with period pain. You are no one special”.
Between the pain, bleeding and other symptoms I was hardly attending school and I made the difficult decision to drop out half way through completing year 10. Endometriosis cost me my education.
After leaving school I began full time work. I somehow managed to hold onto this job for the next 5 years despite my symptoms causing me to miss a lot of shifts. I left this job and found my true calling and started my nursing degree. By now I was 23, my daily pain was low level and I had finally landed myself a decent GP. He referred me to a gyno who performed my first diagnostic laparoscopy. This was unfortunately booked 3 days before an exam but somehow I still made (and passed) that exam! I fought hard and despite not finishing year 10 and living with daily pain, I proudly finished my degree and started my career in Aged and Dementia care.
After my diagnostic lap, instead of getting better, my pain only started to increase.
To manage the pain there were more surgeries, more medications and of course more time off. I began seeing a pain specialist and have since had a spinal cord stimulator implanted, pulse radio frequency and nerve ablation performed and unfortunately I just couldn’t keep it up. I had 90 year olds running laps around me.
It got to the point where I got a letter from HR pointing out I had taken 112 sick days in the past year. Not long after that I was let go from the career I’d given my all to for the past 9 years. I attempted to return to work twice after this but both times I was only able to last less than a week. Endometriosis cost me my career.
My pain continued to get worse so I found a new excision specialist who performed yet another laparoscopy and found my insides were an absolute mess. 10 short weeks later the decision was made to go back in and do a total hysterectomy at just 33 years old. Endometriosis cost me my opportunity to carry a child.
I’m now on disability payments and am admitted to hospital for 8 days every 6 weeks to manage my pain. My body is scarred and damaged from the surgeries and medications. Endometriosis has cost me my future, my independence, my financial security, my self-confidence and my self worth.
Endometriosis can be expensive, but money is just the beginning of what it can cost us.
You can follow Katie on Instagram @chronically__katie