"Another Two Years of Wondering...Do I Even Have Endo?": What It Cost Me
By Dannielle Stewart
Endometriosis is expensive. Receiving a diagnosis, managing our condition, taking time off work, cancelling plans, trying a new treatment, another surgery - they cost us, and not just financially. We don’t talk about these costs - in the same way we’re taught to speak in hushed tones about our periods, we’re told it’s not polite to talk about money. But we need to. This month, for Endometriosis Awareness Month, QENDO is shining a light on all the things endo has cost our community - both the tangible and intangible costs. Join us this month in asking: why, in 2021, does it cost so much to be diagnosed with, and manage, a disease that affects 1 in 10? To kick off QENDO March, our support coordinator Dannielle tells the story of her endometriosis diagnosis, and how the financial cost was both a major barrier to diagnosis and added almost two years to her diagnostic delay.
Moments.
Endometriosis, and adenomyosis, have cost me a great deal of money, both my own and my parents’, but the cost that I find harder to tangibly grasp and yet has had no less an impact, are the moments that are now forever tinged with some experience of pain.
There’s high school, memories mixed with the laughter of my friends, the relief of completing yet another exam that brought us closer to the end, and the teachers I still admire to this day; these are the moments that remain sharpest in my memories. You see the first time I felt the now all too familiar pain that would be diagnosed as endometriosis, I was fifteen, and I can remember everything about that moment. It’s a moment that should have been happy, I’d received an A on a biology assignment that I had worked really hard on, and my teacher had given me the kind of praise any introverted teenager craves. It’s a moment that was co-opted by the deep, intense cramp, as though my internal organs were a damp flannel that someone was wringing out, that was so severe that I stopped in the middle of school. I remember it was a day full of bright, wintery sunshine; I remember where I was standing, between the science block and J block; I remember how quickly I walked to my classroom in J block so that I could sit on the floor in a ball where no one could see me. I also remember so clearly the subtle feeling of resignation I felt, something inside me that said this pain was not some temporary, unexplained blip. I had experienced some silent transition. No, I thought, this pain was forever.
Endometriosis has cost me moments, because there are now things that I remember with such clarity simply because they are associated with my pain. It’s not unsurprising, when I first saw a psychologist at sixteen for my disordered eating and anxiety, one of the first things she taught me was how to slow down a panic attack by picking five things around you and describing them in specific detail. I’ve done it in the midst of a panic attack, to prevent one, or any time I’ve been in a situation that provokes anxiety. Pain is most certainly an anxiety provoking event. As such, when I’m in severe pain I am acutely aware of my surroundings, and before being diagnosed, it felt as though more and more moments were filled with pain.
In 2021, the gap between the onset of symptoms and the diagnosis of endometriosis remains abysmally large. Depending on where you are located in the world, the average ranges between 6-10 years, and this is only an average. I was eighteen when I first received a referral to a gynaecologist, the surgeon who would eventually diagnose me with endometriosis, and later adenomyosis. I’d been having significant pain and exceptionally heavy bleeding since fourteen, and severe pain since fifteen. I didn’t receive my diagnosis until age 20. The first three years of delay were ultimately down to my lack of urgency when I talked to my GP. I didn’t think there was anything wrong, and very few people corrected me - didn’t everyone get period pain? My question was always, why is it that everyone else can cope, but I can’t? It wasn’t until I sat in my gynaecologist’s office for the first time at age 18, telling my story, that I accepted that this wasn’t a personal failing of mine, the amount of pain I was in wasn’t normal.
However after that initial referral, the next two years of delay were down to one thing: cost.
His office was at the private hospital on the hill, it was nicely designed, comforting in a way. Maybe that was just him though. He smiled and gave me an appointment length that, for me, was unprecedented. He listened, without talking, for the longest time while I told him the story of my pain, and as I spoke it dawned on me how much I had let myself endure. He was the doctor, the one I wanted to take me through this next uncertain stage, the one between symptoms and diagnosis, between uncertainty and knowing; I chose him. When I left that first appointment I had a surgical consent form and his receptionist asked if I wanted to be put on next week’s list. I panicked. My Mum was sitting in the waiting room, she had no idea yet what had transpired, but I’m sure she hadn’t imagined surgery. I didn’t realise private health worked so fast. I’d grown up listening to stories about hospital waiting lists on the news, and sitting in hospital outpatient departments with my grandparents for hours waiting for a ten minute appointment. I was acutely aware that we had no private health insurance. I didn’t know how much it would cost, but I wasn’t sure we had it.
We didn’t. Not that much, all at once, not back then. My work ethic comes from my parents, two people who I’ve never seen work with any sense of entitlement, they just work hard. So knowing that something I needed, something that until a few months before I had just accepted as my life, would cost them so much was difficult. Surgery wasn’t something we’d ever had to deal with, if any of us had ended up with a fracture or appendicitis we would have availed ourselves of the public hospital system. Endometriosis is different. A qualified excision specialist who can accurately diagnose and excise endometriosis is not a given in a public hospital, and if you manage a referral the wait for a surgery that is considered non-urgent is in months, often years. It’s common for no criteria to exist for category 1 referrals for endometriosis (the category that insists you must be seen within 30 days), and the criteria for being seen as a category 2 (within 90 days) often involves multiple ED presentations, and evidence of a likelihood of severe disease - which is something no one can know for sure without surgery. For everyone else, it’s within 365 days. Up to a year.
The second I figured out I needed private health insurance is also the second I became subject to a twelve month waiting period for a pre-existing condition. Despite not being diagnosed, endo had been suggested to me and therefore counted in the eyes of an insurer. I was eighteen, doing full time study, and my part time job as a tutor kept me only in enough money to buy my own pizza with my friends at uni, or add to my burgeoning collection of paperbacks. It was not private surgeon’s fee money.
I had the vague idea when I was younger that we weren’t rich, I went to school with kids who were - ridiculously in fact, so I just assumed we were some kind of normal, middle class. I always had everything I needed, and even what I wanted a lot of the time. If we struggled, Mum and Dad never let that stress trickle down to me. Now as an adult who manages the cost of a chronic illness, I realise how much mental energy is spent calculating, planning, making sure that you have enough for everything and don’t run out of money from doing something so casual, like buying a snack. The fact that my parents never told me that paying for surgery wasn’t something they could do, and plodded on with saving, trying to find a way to do it in some vague future, is a testament to their character. Worrying about money is a very adult kind of stress, and it takes its toll.
I had my surgery in December 2015, and it was because my mother works so hard that when she changed jobs, her annual leave accrual was so much that the payout was enough to pay for my surgery - with savings to spare.
Being diagnosed with endometriosis cost me:
17610 Referral Of Patients To Specialists Or Consultant Physicians $150.80 (Anaesthetist Pre Op Visit)
35637 LAPAROSCOPY, involving puncture of cysts, diathermy of endometriosis, ventrosuspension, division of adhesions or similar procedure - 1 or more procedures with or without biopsy - not being a service associated with any other laparoscopic procedure or hysterectomy $1799.65
35630 HYSTEROSCOPY, with endometrial biopsy, performed in the operating theatre of a hospital - not being a service associated with a service to which item 35626 or 35627 applies $0 (Billed with laparoscopy fee by my surgeon, scheduled fee $188)
51300 Surgical Assistant - (Assistance at any operation identified by the word "Assist." for which the fee does not exceed $575.75 or at a series or combination of operations identified by the word "Assist." where the fee for the series or combination of operations identified by the word "Assist." does not exceed $575.75) - $480
20806 INITIATION OF MANAGEMENT OF ANAESTHESIA for laparoscopic procedures in the lower abdomen $478.80
25000 ANAESTHESIA, PERFUSION or ASSISTANCE AT ANAESTHESIA $68.40
23053 Anaesthetic related Item Number, since changed in 2019 legislation, related to anaesthetic time between 60 and 90 minutes $342
My surgical and anaesthetic fees were $3319.65
My hospital fees from a private hospital in Brisbane were $3007.81
From Medicare I received a rebate of $664.20
I did not have private health insurance
My diagnosis cost me $6327.46
And it didn’t stop there. I have since had another full laparoscopy, and a separate hysteroscopy and D&C related to my endometriosis and adenomyosis. As a registered nurse without health insurance, I used my first ever tax return to pay for it.
I have had an MRI which cost $400 and three tertiary pelvic ultrasounds at $300 per scan, they confirmed my adenomyosis, the expertise of the scanner was essential in this diagnosis. There were no rebates from Medicare. An appointment with my specialist costs around $190 each time, the cost has fluctuated over the years. I have seen a pain specialist at $350 per appointment. I have seen an internal medicine physician at $600 for an initial appointment to review and diagnose postural orthostatic tachycardia syndrome. I nearly passed out when I saw the charge in the waiting room, but he ended up bulk billing me, having strong opinions on the fact that nurses hadn’t managed to gain a significant pay rise in their EBA that year. If he hadn’t, I would have had to borrow more money from my parents, because that was my rent for two weeks.
I have never felt animosity towards my doctor for the cost of my illness, it’s not his fault. He gave me the answers I so desperately needed, listens to my concerns, and shows an ongoing commitment to my endometriosis and adenomyosis care even now that I live overseas. When I had no private health insurance, he did everything he could to make things more affordable, offering to refer me to a public hospital with his full notes and recommendations. I choose him over and over again, because I have never had an unnecessary surgery or procedure, and I always feel in control over my management and care. Everything I’ve had has been necessary, even if I resented it at the time. The use of the private system means I have endured very little, if any, wait time for all of these procedures. I am privileged that I am able to work and scrape together the funds for these things, privileged that my parents have advanced in their careers and changed roles resulting in a better financial situation for them, and that they share that with me. There are many out there who could not, and cannot afford this kind of out of pocket cost, and so desperately need it because of the lack of endometriosis services in public healthcare. I know it because it was once my reality too, and could be again at any time. I currently live in the UK, and though I work the same job, I make much less money than I did in Australia, and if I needed private specialist care, I wouldn’t be able to afford it. I have access to the NHS, but like the Australian public healthcare system, it has significant limitations for those seeking expert care for endometriosis and adenomyosis.
I have had fortunate timing, and some plain good luck when it comes to paying the price for existing in this world with three chronic illnesses.
But that doesn’t mean it doesn’t cost me.
Endometriosis has cost me moments of joy, time spent with friends, hours and minutes spent in bed instead of out in the world, productivity, hours of work, people’s perception of my work ethic, and at times my sanity. These intangible costs are the ones we hold onto, because they are the ones that cost us every day, with interest. But don’t forget that amongst all this there is a very tangible, very large cost associated with having a chronic illness from diagnosis to management. It’s not lofty, it’s not something indescribable, it’s sitting in my Medicare benefits statement.
Endometriosis has cost me so many things, but it has cost me the most financially.
The rent I pay for existing in my body shouldn’t be so high. It costs me, but it costs you too: in lost productivity, in sick days, in its impact on the economy as a whole. We all have a stake in making it more affordable to be diagnosed with and manage endometriosis.