What It Cost Me: Spending Time With Endo
By Lauren Iacobucci
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? This week we’re talking about the cost of endometriosis with Lauren, our QENDO Mentor Program Coordinator and a registered nurse. Lauren talks about the investment of time she has made in managing her symptoms and illness, and highlights some of the ongoing expenses associated with endometriosis, the kind that inevitably add up.
When I first heard that the theme QENDO had chosen for endometriosis awareness month was ‘What It Cost Me’ my first question was ‘how do we even start to calculate that?’ How do you put a cost on something that’s taken so much from your life over so many years?
Let’s rewind a minute back to my school days. I was 12 years old and in year 7 when I got my first period. I don’t remember it being anything horrendous at the start but gradually it got worse. I missed a lot of school and I needed to use overnight pads during the day, sleep with a towel on my bed because I flooded the sheets overnight, and my periods were excruciating. But it wasn’t really spoken about or pointed out that this wasn’t normal.
When I think of school and having my period, I think back to year 8. I have a couple memories burnt into my brain. The first is getting up during class and having this girl who I hardly knew come up to me to tell me there was blood on my dress. I was mortified. Our schools summer uniform was a light grey so there was nowhere to hide. A friend lent me their jumper to tie around my waist to hide the blood and I went home crying out of embarrassment. This memory came up in conversation recently with my mum and I mentioned that I remember she was at work, dad was home and I was too embarrassed to tell him - because what teenage girl wants to talk to their dad about their period? I was left to try and figure out how to use the washing machine to wash the dress and remove any traces of my ‘shame.’
My second memory was at camp. I got my period and kept bleeding through the overnight pads. I struggled to leave my bunk because of the pain and missed a lot of rehearsal. (Did I mention it was band camp?) During one rehearsal I was pretty sure I bled through and stained my pants so I excused myself and out of embarrassment I walked/ half ran/ backed out of there and ran to the toilet block and cried. While I know now that I shouldn’t have been embarrassed because periods are normal and we should normalise talking about it, if you asked me back then what endo cost me I’d say my dignity. Oh and probably a huge part of my education too.
Fast forward to working full time as a registered nurse. At this point I’d say my symptoms had been well controlled by the pill until suddenly they weren’t. I couldn’t work with the amount of pain I was in, I could hardly stand up so I called in sick a lot until I had no sick leave left. I had my first laparoscopy at 25 which required 3 weeks off work and over the next few years I had so much time off work because of pain issues and complications that I found I was off more than I was there. I had goals at work to apply to become a clinical nurse specialist but the time I took off work meant I didn’t have this chance. What has endo cost me? Advancing my career and a whole lot of wages.
Mental health is also a very big issue in the endo community. While I’m not trying to claim that endometriosis is the sole reason I have anxiety and depression, it definitely is a large contributor. When my endometriosis pain was at its worst, my mental health plummeted. It was hard not to think ‘what’s the point in living?’ when every part of my life seemed to be effected by endometriosis and the pain. What has endo cost me? A lot of anxiety and depression.
Here I am writing this while on day 3 of my first endo flare since having my daughter. I’m sitting here feeling like my uterus may fall out when I should be giving her my full attention. What part of the parenting books talks about managing endo while having to raise a baby? How am I meant to explain to my husband that I’m not annoyed with him, the pain is just really bad? How do we not let this horrible disease affect our marriage? What has endo cost me? Time spent with my husband, my daughter and my family.
I’m realising that while endometriosis has affected all aspects of life, the biggest and most obvious trend I’m noticing is that endo has cost me TIME. Time I should have been at school, being a normal teenager, at work, spent with my family, time spent enjoying life and time spent at appointments. Between the GP, gynaecologist, psychologist, ultrasounds, pain specialist, pelvic physio, naturopath and hospital visits, I can’t calculate how much of mine and my loved ones’ time has been given up because of endometriosis.
And whilst I’m here listing appointments, let’s discuss the monetary costs. For those who aren’t aware, investigations into endometriosis and the diagnosis have large out of pocket expenses because Medicare don’t give a huge rebate, the scheduled fee for some of our most complex surgeries is abysmally low, so there is a gap between what Medicare will pay and what the surgeon charges. I’m very fortunate to have private health insurance and to have a gynaecologist who didn’t charge me an out of pocket for my laparoscopy surgical fees, so I only had my $250 hospital excess and $250 anaesthetist out of pockets. I tried to calculate exactly what I spent over a period of time but I got to $5000 worth of out of pocket costs before I lost count. To give people an idea of what my appointments cost, I’ve listed the standard fees I’ve been charged. Keep in mind that while it may not seem like a lot individually, when you need to pay for these regularly it sure does add up. I know for some people, those who can’t work or who have low income, these costs would be overwhelming.
We really need to do something about the cost of endometriosis. Come on Australia, it’s time endometriosis becomes more affordable to live with.
Gynaecologist fee $100. Rebate is $37.
Ultrasounds fee $285. Rebate of $83.55
Physio fee. Initial appointment $148. Subsequent appointment $84. Rebate of $52.95.
GP fee range from $38.20 to $138.30. Rebates ranging from $38.20- $114.
Psychologist $190. Rebate $84.80 with care plan (Care plans only cover a certain number of sessions per year)
You can follow Lauren on instagram @mamalifewithlaurendo
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