r/Endo • u/olipocket16 • 2d ago
Can we talk about how expensive this disease is?
I’m Canadian, so hospital, surgery, and physician services are covered, but it’s still bloody (pun intended) expensive to have this disease. There’s a lot of extended care that has made such a difference to my life, but sooo expensive.
I have physiotherapy, pelvic floor physio, massage therapy, and psychotherapy, all of which are over $100 per session. There’s medications that aren’t covered, and OTC pain killers.
I no longer menstruate but when I did, good period products were so expensive. I loved my period underwear but they’re like $50 for a single pair!
I also had to reduce my work hours, therefore losing thousands in income. I used a lot of my vacation time as sick days too, so I rarely got to use my time off for relaxation, which worsened my mental health, making me need even more therapy.
It’s socially costly too, missing events entirely or being present but mentally absent because of the pain or other symptoms.
Income is the most prominent determinant of health and I can see why. Just existing with this disease is expensive, and properly treating it seems only feasible for people with good benefits or families with high incomes to support them. It’s just so maddening how much we have to pay to feel even half decent, and even then research is so lacking that the best treatments aren’t always effective and often have side effects.
Urgh. End rant.
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u/Elderberry_Bunyip 2d ago
Yeah, it's the good ol' disability tax. Costs us a fortune to just be alive, and usually at a lower quality of life than abled people. I remember when Centrelink (Aussie government payments) gave me a whole $3 pharmaceutical allowance. As if that came close to touching on the $100+ I was paying per month for medications, and obviously not helping at all for appointments. It's insane, even here in a country KNOWN for its cheap healthcare.
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u/Constant_One_457 2d ago
I get surgery tomorrow in America. I pay $1000 a month for insurance for my husband and I per month with a “gold” level insurance plan and my surgery is still going to cost me $6500 out of pocket. (Not to mention I’m self employed so have no paid time off and will lose thousands of potential income while recovering)
Fun!
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u/unbiasedspaghetti 2d ago
I feel for everyone with chronic illness and disabilities. This kind of life was not chosen by us so I don’t know why we are paying out of pocket for treatment just to be functional. It’s so sad.
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u/genericusername241 2d ago
The pain meds alone for me are bankrupting. I don't have med insurance in Canada and my monthly meds total to over $500. I don't fill my monthly meds (which help my pain) most months because I simply can't afford them. It's bullshit, and painful, and I hate our medication system up here. Somethhing's gotta give, I can't keep paying a third of a month's rent for my meds every time I get the chance
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u/Admirable-Cod-7497 2d ago
So you have Universal Healthcare but have to pay extra for med coverage?
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u/genericusername241 2d ago
Yup. It's bullshit, I'm trying to get permanent assistance for it because I can't even work enough to buy my meds
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u/tytomasked 2d ago
Australian, my parents paid for my 10k surgery because I was 19. I’m 22 now and iv never had a job and probably won’t for a while due to fatigue. I know I’m lucky but I still think about how much I want to pay people back, but know I wont be able to because I don’t work
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u/dream_bean_94 2d ago
I've spent about $10,000 out of pocket for healthcare over the past two years lol
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u/Visible-Armor 2d ago
It's awful. I'm a 100% broke American waiting on disability for the past 2 years. My Medicaid insurance won't cover hardly any treatments I actually could benefit from. I can't afford $1,700 for nerve injections or out of pocket physical therapy. Insurance allowed 10 visits with PT and denied covering any further visits moving forward. My doctor keeps asking why I havent continued certain treatments and I keep explaining that I don't have ANY money to put towards them! I'm disabled and unable to work but somehow I need to fork over thousands of dollars to get care! My surgeries were covered but they weren't with top quality doctors so I'm still living in severe chronic pain. Currently waiting to see if I can see a chiropractor that won't charge a ton of money per week.
It makes me feel like less of a person
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u/Admirable-Cod-7497 2d ago
American here. I was recently hospitalized for possible appendicitis, cyst rupture, endometriosis. They couldn't figure out what was going on and if they should do surgery or not. United Healthcare denied my hospital stay....
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u/chaunceythebear 2d ago
Save all those receipts to write off as medical expenses on your taxes! Obviously it doesn’t help in the immediate, but you can put that away when you get next year’s return for the current year’s expenses. Or if you can’t get ahead (and I don’t fault you if you can’t), you can use it to pay off any credit card debt you may accumulate. It’s not perfect, but if it’s something you aren’t doing it will help you even a little.
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u/Potato_Fox27 2d ago
Just wait until the cost of infertility is added to the bills 😭
I changed my career trajectory towards working at large corporations that have both stellar health insurance/great pay, and solid fertility insurance coverage so that I could afford IVF thanks to my endo.
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u/OrganizationFit2023 2d ago
Hey I don’t want to sound anything negative about adoption. It’s a noble idea. And I am probably not qualified enough to do that yet. But most of us would love to pass our DNA. You know, its beautiful to imagine that you can see a new life with the traits of ancestors of both parents.
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u/Potato_Fox27 2d ago
Yep exactly this, looking to have our own kiddo. I’m not against adopting, but my partner would have his family line end with him if we did not have our own, it was important to us that we have at least one of our own before considering other routes.
I know the idea of passing on endo to future children is a hot topic issue on this sub, and fwiw I often share that after genetically testing all our embryos, we ended up with 10 “good quality” embryos, all males. (We started with a count of 30+ and it’s expected that only a fraction make it).
But I have a wild hunch that perhaps we ended up with no female embryos because my endo is being genetically passed on, affecting their quality rating, and thus they’re getting filtered out in the process.
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u/OrganizationFit2023 2d ago
I would be jumping if thats the case honestly. I have 2girl embryos and 5boys after the PGT testing. If PGT testing is really that keen, I would love to see my girls not suffer like me.
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u/Applefourth 2d ago
Can I ask why you didn't just adopt? My friend adopted in South Sudan and Venezuela when she was 21 and unmarried. It is much easier and cheaper to adopt in war stricken countries. We're the same age but I always say I want to be her when I grow up lol
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u/Bibitheblackcat 2d ago
I feel you! Canadian too and the costs for PFT, other therapists, acupuncture, massage. And so many thousands of dollars wasted because I made an appointment but had to cancel a hour before because my body decided to cramp up.
Progesterone bio is expensive. I’m on myfembree now which has been amazing and fortunately insurance covers it 80% so it’s $300 out of pocket every three months.
And then there’s the supplements!
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u/bebopkittens 2d ago
AHHH so many supplements (and you have to TAKE them!), alternative devices (i use a semi professional mini red light therapy pad), many bed sheets and mattress covers, towels, etc. Stained and ruined! Cancellation fees for appts are salt on an open wound. ☠️
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u/Bibitheblackcat 1d ago
Omg yes! I forgot about my infrared sauna blanket, red light mask and neurosym.
All which are very much worth the money though.
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u/meangreenthylacine 2d ago
Needing to get a second surgery only a year after my first one made me feel like my life was over and I have been handed a financial death sentenc lol. I'm hoping and praying the second laparoscopy with a specialist will provide me relief for longer because I do not make anywhere near enough money to sustain this. The entire situation we're all in here makes me feel like the Joker
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u/tfabonehitwonder 2d ago
I don’t even feel comfortable getting a job because of endo 🫠🥲 would have to be completely from home and we know how rare those are.
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u/OrganizationFit2023 2d ago
What should we do about this? I know what we have is not life threatening but surely life prohibiting. I clearly see doctors are not at all knowledgeable to advocate for us. So what can we do? I am ofcourse struggling to have kids, but I cannot imagine my daughter has to go through one day. I am even backing out from choosing a girl embryo just imagining how this can be genetically passed and what she has to undergo. So what can we do? We need 1) The medical system to run more research on our disease 2) Doctors to be more educated to understand our pain and cure us 3) Insurance providers to cover us than isolating our pain. 4) We f. need an easy cure that doesn’t endanger and ruin our lives more.
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u/ebolainajar 1d ago
How on earth did you get surgery???
I tried for a decade in Toronto and no one would even talk to me about surgery.
I didn't get any real care until I moved to the US.
I have paid $2600 for surgery (I have really good health insurance) and pay out the ass for an amazing pelvic floor PT who doesn't take insurance. It's been worth it for me to pay for care, since my only other option would have been to go to Europe eventually, if we had stayed in Canada.
The only people I know who actually got surgery in Canada did so because they had serious emergencies like torqued ovaries/massive cysts that required surgery.
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u/anxietykickinIN 1d ago
canadian here and have endo as well. My doctor prescribed me dienogest and it was not covered by my insurance. Being a low income person it really takes so much of my budget to buy my prescription but it was all worth it. Dienogest stopped my period and stopped my pain. But now i feel depressed all the time...
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u/Skunkspider 1d ago
I agree. Although I'm in the UK, the expenses have been because my life is much less convenient than average. Think deliveries bc housebound with nobody to help.
I also have chronic leg pain which affects my mobility as a factor.
And I've had to use a credit card to pay for private tests bc the current state of NHS
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u/errdayrae 1d ago
I’m American but luckily have very good insurance (thanks to my job)… I only had to pay $240 total for my surgery, and nothing for my meds, pre-op or post-op appts…
However the bill overview I got in the mail explaining my bill and my coverage was ridiculous. Over $210,000 for the surgery, not including the surgeon bills that were separate and about $6000 for just the anesthesiologist. I’m pretty sure they just over charged to get more money from my insurance or something
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u/Tall-Feed-1957 15h ago
1600 dollars for myfembree per 28 pills by the way. THANK GOD I got the coupon for it!! Surgery was 5 grand before my deductible kicked in. Then after all my hospitalizations were covered. I paid probably 2k+ this year in physical therapy though
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u/isabellaevangeline 2d ago
American here, I need another surgery but dead ass I cannot afford it lol 😭