What It Cost Me: Kim's Journey to Surgery
By Kim Salleh
Hello, my name’s Kim and I’m 32 years old. My Endo journey started 8 years ago when I started fighting for a diagnosis after years of painful periods and a myriad of other hormonal issues. This video picks up in June 2020 during my wait for excision surgery with one of Australia’s best excision surgeons.
This video is just a snippet of the diary entries that I filmed to record my ‘Journey to Endo Surgery’. I felt frustrated that nobody other than my closest family understood Endo, let alone what I was experiencing every single day.
I shared the video to my socials on New Year’s Eve 2020, hoping that I could change what would happen to at least one other person suffering from Endo, PCOS or any other chronic illness that has no cure or treatment.
What It Cost Me
It’s worth noting that I live in regional Victoria and I’m a strong believer that where I live and the services available to me, are the reason I’ve had three surgeries, two of them failures.
It’s been eight years, three surgeries, hundreds of painkillers and more hospital visits than I care to recall.
After my mum was diagnosed with Endometriosis, I saw a gynaecologist in the public hospital system where I live. I think I only managed to get a referral because my Mum was officially diagnosed. Here, I was diagnosed with PCOS via ultrasound and had surgery with ablation to treat Endo. I was never told about ablation vs excision and was never given a choice. This was mistake number one.
Even though I wasn’t given a choice or even educated about excision surgery, I think I would have had the surgery regardless. Naive 24 year old me was excited by a free surgery that would fix years of pain.
I was fairly pain free for around eight months after surgery, although thinking back, pre-surgery pain levels were nothing compared to August 2020.
Let’s fast forward to a second specialist and second surgery. I saw another doctor in Melbourne, which wasn’t a great experience, but they didn’t in fact operate on me, there was another surgeon in the public system who did this. Again, not an endometriosis specialist.
Again, no mention of ablation vs excision. I still didn’t know about it. I believed the Doctors. However, 12 months later I requested surgery notes and it does say both were performed. Something is better than nothing, right?
I’ll skip over the next 6 or so months, but I was diagnosed with almost every acute chest syndrome under the sun following my second surgery. The diagnosis that stuck was Costochondritis. It’s gotten better, but I do still experience chest pain when my Endo pain is bad.
6 months later I was over the chest pain and the constant pain in the lower left side of my stomach that had been there since day one. All surgery had done was make it worse.
I was fed up and spent the following months researching and looking for answers. I stumbled across my current surgeon and Endo specialist and thought, f#$k it. I was being constantly screwed over and needed a fair go.
I made an appointment, told my GP where I wanted to be referred to and had *really really expensive* internal scans taken by another Endo specialist and booked in for expert excision surgery on 14 October 2020, thanks Covid-19.
The rest is pretty much history but it was by no means easy. It’s been a long, expensive and emotional journey so far. But here’s the bit that you’ve come for - what it cost me. Let’s talk about the loose costs of my Endo journey.
Surgery 1
Consultations with public gynaecologist - $75 each with medicare rebate
Scans and ultrasounds - free (funded by Medicare - government)
Surgery - free (funded by Medicare - government)
Surgery 2
Consultations with private gynaecologist as a public patient - $150 each with medicare rebate
Note: no scans were requested before this surgery
Surgery - free (funded by Medicare - government)
Surgery 3
Private health insurance - $180 per month for gold cover with Medibank Private (you don’t need gold cover for Endometriosis, just cover for gynaecology)
Consultations with private excision specialist - $300 for the first and $200 after that with Medicare rebate of $75 (I attended 4 consultations before surgery rolled around)
Expert internal ultrasound and scans - $300 with Medicare rebate
Surgery
$4,000 out of pocket to pay the surgeon (no gap cover = nothing back from Medicare)
$500 excess for my private health insurance to pay for my hospital stay
$450 out of pocket for anaesthetist
$1600 had to be paid after surgery for the procedures (I was able to claim this amount back through Medicare and my private health fund)
Once everything was paid in full and reimbursed, I was only left paying for my surgeon and the out of pocket for the anaesthetist. All support staff and my full hospital stay was covered by my private health fund and paid upfront. If you don’t have private health insurance, it might help to know that my fully funded surgery quote for the private system (including hospital stay) was $16,000.
I have no doubt that more surgeries are in my future because let’s be honest, this disease is relentless. But, I feel like I’ve worked out the system well enough to choose the right path for my Endo journey.
If you’re lucky enough to live in a capital or regional city and have access to well trained excision surgeons in the public hospital system, gear up and go get ‘em. But my opinion remains that if possible you need to choose a private excision specialist first. Don’t try your luck with ablation. I am worse off for it and I can never go back. Excision is the gold standard, but getting access to isn’t a given for everyone.
I have made a point over the last 10 years to not let my Endometriosis destroy my life. I’ve struggled every day and I’ve spent years training my mind to push through the pain so I can enjoy my work and be successful. I won’t stop fighting or sharing my journey when I can, because it might help you.
Don’t do what I did. Please learn from this story. It took until my third go around to feel any sort of relief. A chunk of Endo was removed from exactly where I’ve been complaining of pain for the past eight years. It’s taken three surgeons eight years to remove Endometriosis from exactly where I’ve been telling them it was.
*mind absolutely blown*
Thank you Kim for sharing this intimate surgery video diary with QENDO, and shining a light on the emotions and frustrations that comes from trying to get the care you need, and waiting for something you know could be a pivotal turning point in your endometriosis journey.
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