I'm always struck by stories of how difficult it is to get a condition diagnosed. Endometriosis is a great example as the OP author notes.
The New York Times used to run a series of medical case studies in their magazine, and over and over again the story was essentially that the patient sought care from primary care and specialists, without success, and were generally miserable, until a miraculous event happened, like a friend's aunt knowing someone at Johns Hopkins, and that doctor having the time to think about it. The problem was incredibly evident for female patients.
I don't know whether this is a result of doctors being burned out by the system that they work in, a certain doctorial arrogance that diminishes their listening skills, over-reliance on heuristic diagnoses, some kind of ignorance of womens' conditions, or even a kind of medical misogyny. But it pushes people pretty quickly towards Dr Google and sometimes, sadly, into quackery, and that can't be a good thing.
The cause is pretty easy. Patients aren't treated like mysteries, they're treated like BAU Jira tickets - just get it done so you're on to the next one. The system is built to handle the 90%. If you fall into that other 10%, it won't work well for you. If you have provider companies and insurances pressing you to hit some metric, that's what you have to do. If you are concerned about malpractice, then you have to just read from the Epic system. No surprise we're in this situation.
Well, that, and deviation from the established practices can make it difficult to get paid by the insurance company and/or open you up to legal risk (particularly if something goes wrong). Or so I understand from those in the system in the US.
I've had three doctors in the past year tell me that either I wasn't a candidate for cancer treatment because I was gonna die in the next 3 years anyway, or that my best bet was a liver and heart transplant.
All of them read the first page of my medical records upon being admitted to a hospital in January. Not a single one of them read anything after that and it shows. One of them was stricken and amazed that I was walking into his office without aid or an oxygen mask.
Gives me great confidence in their ability to pay attention to detail.
Amusingly this is why people say LLMs will beat doctors. It’s because the 90% of cases is so easy that a motivated guy with Google can get there and a smart NP can get there too.
It isn’t that it’s easy to do all a doctor does. But their training and knowledge shines in the 99th percentile case except they never exercise it there so you can usually get there with Google.
“Oh but an LLM will guess the common case and never think of the rare!”
Yeah but so will a doctor given 10 minutes on it. They’re not exactly going to House MD you. You’re gonna die.
Frontline medicine is all about “just do x” hacks to try to move quicker. We turn people into a fault tree, and enforce that with EMR and audit/review you create a bias to focus on the 80/20 approach. Essentially turning medicine into a helpdesk.
A family member ran into this with a brain tumor, which for a patient presenting with a headache is a 1% likelihood. Slightly elevated blood pressure was the focus in that case. Persistence and a subtle symptom changed triggered the CT scan that ultimately led to the diagnosis about 8 weeks later. Unfortunately with melanoma, 8 weeks is a long time.
Ultimately there’s no right answer. 99% of people with headaches have high blood pressure or other “normal” causes. Sending 1,000 people to CT to identify 5 tumors will cause 50 other complications.
Think of doctors like a helpdesk in a big company. Open a ticket, but work your network to get someone who isn’t dumb to think about it. If you’re too poor or don’t have friends and advocates, your outcome will be no mas.
> Sending 1,000 people to CT to identify 5 tumors will cause 50 other complications.
This is something frequently missing from discussions like this.
Something that has a fairly small per-patient risk like a CT scan, causes far more pain than reduced missed diagnoses would solve if applied across the whole population.
My significant other is going through this situation, and in my experience it seems as though most doctors just simply don’t care to actually find a diagnosis (or at least, don’t have the time or motivation to care), combined with a hefty dose of “that’s not my job”. My SO has been to specialist after specialist who spends a grand total of 2 minutes listening to the symptoms, followed by “well let’s do some blood tests and see what they say” (ignoring that the last 5 doctors already did blood tests). And then when the blood tests come back with nothing obvious, the doctor just throws up their hands and says “well I don’t know what to do, you should go see <other specialist>”.
The reason the “family member or friend who knows someone who can recommend a doctor” seems to work well, in my experience, is because that doctor then has some motivation to actually care, as the patient is connected to someone they already know and care about.
Our medical system financially incentivizes doctors to see as many patients as possible, but doesn’t financially incentivize actually making them better. For that, the system just hopes that doctors will care, without giving them the room to do so.
Another way to look at it instead of "they don't care" is "they have nothing they can offer."
We have progressed fantastically on the common medical conditions, but once you get into more rare stuff it gets a lot harder. Doctors have huge breadth of knowledge, but the sum of human medical knowledge could never fit into a human brain, even within a specialty, and even then there's so much we are not even close to understanding or knowing.
And for rarer stuff that is just getting discovered and learned about, there will only be a few specialists who are the ones figuring it out. That's why you go to lots of doctors that offer nothing, then a hint directs you to the doctors that are in the cutting edge of expanding knowledge.
Even if we financially incentivized each and every doctor to spend hours or days trying to find out what's going on with a patient that the doctor can't help with their current knowledge, it's quite likely that doctor could never help on the basis of a single patient. Medicine advances through discovery in groups of people and transferring knowledge from the results of one patient to others, incrementally. A single patient is far less likely to lead to advancement than a doctor having a group of people with similar symptoms.
The financial incentive for this discovery comes from research hospitals that collect these difficult cases, and obtain federal research grants from the National Institute of Health that allows them to do research and publish papers and share the knowledge. The proposed budget for the US drastically slashes this, greatly reducing our ability to advance medicine. And in advance of the budget cuts, the NIH is in violation of current contracts stopping payment, resulting in massive waste as research dies on the vine.
So what I'm trying to say is that the logistics of advancing medicine require grouping patients, and the place where that happens is at research hospitals, not at the local community doctor for everyday care. And our society is choosing, consciously or unconsciously, to drastically reduce access to that type of care.
What kind of specialists? An ex of mine had severe endo, and it was finally treated by a reproductive endocrinologist (in Raleigh, NC) after going through many other doctors.
What our "system" seems to actually incentivize is keeping people chronically ill so that they're forced to continually pay for their non-treatment.
It's hard not to be incredibly cynical in the face of things like this. Way more than once have I thought "this is a cruel and unusual punishment" -- wait aren't those prohibited?? Oh right we get around that by making cruelty usual.
Popular understanding, particularly in the United States, is a little behind the scientific opinion on the subject. Most women I've talked to are still under the impression that endometriosis can only be diagnosed by laparoscopy. But there have been improvements in the use of contrast MRI for diagnosis, and as of 2022 the guidelines in Europe recommend MRI as the first option.
However, the protocol isn't perfect, and there is probably still room to develop better contrast agents and MR sequences.
>some kind of ignorance of womens' conditions
Some things are just hard. The treatments for benign prostatic hyperplasia suck too. There is no effective reversible pharmaceutical male birth control. Et cetera.
I think it's probably just really hard to diagnose uncommon diseases in people (although endometriosis in particular may be fairly common). I have trouble diagnosing some bugs in software at my job; I imagine it's much harder to diagnose issues in a human body.
Every woman I know who's been properly diagnosed with endo had to self-diagnose first, and then advocate to be tested. Not a single one was properly diagnosed by their doctor first. I'm not sure what the reason is, even women who go to doctors who specialize in endo seem to miss it unless the patient self-identifies.
The path to figuring it can be long and sometimes improbably. For example, somebody I know was watching a youtube channel they like, and one of the creators put out a side-video about a short informational cartoon they made about their own journey discovering they had endometriosis -- which also echoed this same diagnostic pattern.
My friend saw something in the cartoon that seemed familiar, decided to go get a biopsy, and voila - a lifetime of pain was finally answered. She was in her late 40s, and decided to just go get surgery and now a few years and a hysterectomy later lives pain free.
I was suffering from Secondary Hypogonadism despite my Testosterone levels showing "normal" for years and suffering from all the symptoms: brain fog, fatigue and no libido.
I spent over a year going through the Canadian healthcare system, seeing different doctors. Most either brushed me off or implied it was all in my head and normal exercise would fix it (I am fairly active and have a healthy BMI). Even the few who took me seriously refused to run further tests or offer any treatment.
Eventually, I gave up and saw a private urologist. He looked at my results, immediately ordered more tests, and it was obvious from the new data what was going on. He prescribed HCG, and within a month I felt like a different person. Symptoms gone, T levels back in range.
Really wish more doctors took the time to actually listen, especially when a patient clearly isn’t doing well despite "normal" labs.
I'd be interested in what the problem was.
Was it too high SHBG and thus too low free testosterone? I'd be shocked if any doctor couldn't recognize that.
The major difference between private and public health care providers. Public providers are often burned out to a crisp and have little empathy or energy left. Private providers are compensated for each task and the incentive system and work ethic is dramatically different.
i have dupuytrens (aggressive and at a young age), and my canadian doctors didn’t know that there was a radiation oncologist downtown doing rad therapy for it. waited 4 months and found out on google. how is it defensible that a doctor doesn’t know that someone in the same system as them offers treatments?
It’s also hubris and overconfidence. My child had a disease that’s very rare and hard to diagnose. A week at Johns Hopkins with hundreds of thousands of dollars of tests found nothing. The doctors sent us home with a “it’s just a virus, it’ll probably go away in a few weeks”.
Some 72 hours later, armed with google, Wikipedia, the rest of the internet, and coffee (with very little sleep). I figured it out.
But when I called Hopkins they said “you are wrong, can’t be that. Stop using the internet, you have no idea what you are reading and you are only scaring yourself”.
30-or-so specialists from a variety of top US hospitals kept saying the same thing (with the addition: “if Hopkins says you are wrong, you are wrong”.
But then, we saw a specialist in a world top-10 hospital outside the US, who immediately agreed with my diagnosis. Treatment started the following week (only 3 months lost) and the condition started to resolve.
I kept in touch with the doctors I had seen before. They didn’t care. Some thought it was still the wrong diagnosis. Until a year later, near complete remission - and pathology of a resection - confirmed it 100%
Modern medicine is part science, part craft, part cult. You tend to meet the cult aspect more often with rare or hard-to-diagnose diseases.
> But when I called Hopkins they said “you are wrong, can’t be that. Stop using the internet, you have no idea what you are reading and you are only scaring yourself”.
I am sorry to hear that. This is the path once upon a time I would of taken. Just assuming it was bad to be Dr Google as I'd learned from a young age. Let the doctors do their job and all that. Now I am the complete opposite.
My neurosurgeon HEAVILY pushed me to start "googling" and "reading whatever you can" and straight up told me not to trust general practitioners as the vast majority of them are woefully ill equipped to deal with anything I am dealing with.
Thank god I took his advice, because I almost did the same thing again. For months GP's were telling me my new and expanded pain was the same old SCI injury "flaring" my CNS, and that I should just take more drugs/do more physio and literally I got asked "what do you want us to do? Take the painkillers like we do told you"
Well, three specialists (and two neurosugeons later) its NOT the existing injury, its severe bilateral cervical radiculopathy from where my cervical spine is disintegrating on the layers above and below my original fusions and its not going to magically get better by throwing even more drugs at it, or moving my physio sessions from 3 times a week to 5 times a week.
Once upon a time, I would never have said this, not deeming myself to know enough to possibly say it, but I have met now a lot of very useless doctors, like just outright incompetent.
I just had an "on this day" reminder pop up that told me I've been searching for the answers to two relatively common problems for twelve years with no progress, unless you count ruling out the same damn primary suspects over and over and over. I get migraines at the same time of month every month, and I have chronic pain in my heel and 2nd metatarsal--and no, it's not plantar fasciitis.
Every couple of years, I get renewed energy to try the search again. It lasts for a year or two before I run out of steam, give up, and decide to live with it, because I'm easily 6 figures into trying to be able to walk without pain and not be laid out with a headache every month.
100% of doctors started with telling me the problem was my weight. I lost 50 lbs and all my symptoms got worse, so they pivoted to telling me it's psychogenic. All of them. But I've been through all the recommended types of psych treatment too, and a few experimental ones besides.
In point of fact, I cannot convince anybody who might know to care enough to find out, and it seems unlikely I ever will. There doesn't seem to be any good reason I should be stuck with these pains, but there are only so many times I'm willing to try the same things, expecting different results, because this doctor thinks all the other ones must have been too stupid to rule out the obvious causes.
I recommend taking probiotic Bacilis Subtilis gummies if you feel a migraine starting, I don't know why it works but it does (and I first heard about Bacilis Subtilis hear on HN.)
That really sucks.
It sucks even more that your situation is common to many many women.
One of my best friends faced a similar struggle and took things into her own hands.
Through a lot of trial and error and a lot of studying, she's been able to overcome most endo symptoms and has started her own program where she teaches other women how to do the same.
I'd love to connect you to her if you want!
She's already helped around 30 women with similar struggles.
Some have managed to get rid of bloating in a matter of weeks, one even has Crohn's disease and for the first time in 14 years woke up without any stomach pain.
My friend's program isn't a "magic pill" obviously but it sounds like it's worth a shot.
Are you a woman? Do you take homona birth control other than the "Mini pill"? My wife read online that it's not safe to take typical hormonal birth control on the standard pill if you get migraines with auras, because it increases your risk of stroke and mentioned her migraines to her gyno, who was like "Oh shit yeah we have to put you on the mini pill then." Which was crazy, because aura migraines wasn't on the laundry list of possible conditions on the intake form. Anyway, she got fewer migraines after changing birth control, so...maybe relevant?
Migraine drugs have improved incredibly in the last few years. As a fellow sufferer I recommend you ask about them: given the same time of month you can likely preempt them entirely. I hope you get some answers!
It is possible you have an undiagnosed latent infection, I spent nearly a decade with one trying this and that until I hit a winning combination. If you go looking for this protocol you'll find the absolute worst schizo rants online, but the actual ingredients have solid science behind them (you can literally look them up on google scholar):
The N-Acetyl Cysteine Protocol
Morning and Evening:
600mg NAC
Oregano Oil (min. 40mg Carvacrol)
Black Seed Oil (1 teaspoon)
For the natural oils, my strategy is to mix 235ml Nature's Way Black Seed Oil with 30ml Natural Factors Oil of Oregano, take one teaspoon morning and evening. This mix delivers the prescribed amount of carvacrol per teaspoon. Most of my problems were with the upper respiratory tract and taking it orally this way coats the throat well.
The other intervention that had big effect on my health in the last few years was adding a daily mineral supplement. I'm an avid tea drinker and it turns out that can interfere with your absorption of minerals, plus with the nutrition crisis it is not clear if our produce even has enough for optimal health. I simply take the maximum recommended supplementary dose of Mg, Ca and Zn.
Also, check your Vitamin D levels if you haven't. If you have been dealing with this for 12 years, I assume you have already ruled that out, but I'm mentioning it for completeness. Good luck.
P.S. One last thing to mention - try the carnivore diet for a bit (if you haven't, of course). I know people who have found it a big help, but then again for some it didn't do anything. Give it a month, see how it goes, obviously stop immediately if you get serious symptoms.
I wonder how much is due to lack of feedback? I went somewhere due to knee pain. After some time got a diagnosis and some exercises. Didn't feel it made sense, so I went somewhere else and got a better (the correct) diagnosis and got my issue fixed.
To the first PT, the only signal they have is that I didn't come back. If their assumption is it was because I got cured, they will probably give the same wrong diagnosis the next time someone shows up with the same symptoms.
"Now it is a strange thing, but things that are good to have and days that are good to spend are soon told about, and not much to listen to; while things that are uncomfortable, palpitating, and even gruesome, may make a good tale, and take a deal of telling anyway."
“Happy families are all alike; every unhappy family is unhappy in its own way".
To sum it up, not much to write about ones that went to primary care and were handled properly.
I know a few doctors and the vast, vast majority of patients have what you thought they had when they walked in the door. Boring, could-have-guessed illnesses (or maybe not).
99 times out a 100, if the doctor thinks it's something else, it's not.
So when someone comes in who doesn't fit that mold, they get shuttled around to a bunch of doctors until it gets bad enough someone is forced to think outside the box.
It was the case when my wife was diagnosed with MS 17 years ago. There was no "test for MS", just a statistical answer "it looks like this is MS because of some symptoms, some non-conclusive reults and how the MRI look like".
We just took it for good money ans she is treated since with reasonable results. But it may be something else.
One interesting thing I observed by being trilingual is that different countries’ medical systems will give different and sometimes contradictory instructions when you Google for some medical information.
One of this is sex during menstruation. I was instructed that it was not a problem but in Japan they specifically instruct that it is discouraged because there might be a link with Endometriosis.
If you try to Google if sex in menstruation can lead to infertility you are going to find little information in English, but you are going to find many hits in Japanese.
There are so many more of these. A common one is everything to do with babies.
* In the UK you should not start solids before 6 months, in France you can start at 3, and should at 4.
* Baby bed room temperature: in the UK 16 degrees Celsius, France 19 degrees, in the nordics you should have them sleep outside while I've been told that in Hungary 25 degrees is considered optimal.
Don't underestimate how much of health science is embedded folklore knowledge by people who thought they managed to extract signal from noise with a lot of confounders, especially if the patient is not sick or cannot express their subjective experience.
Also, in the US people have a deathly fear of bedsharing with the baby due to concerns about sudden infant death syndrome (SIDS) and yet bedsharing is common in places like Japan while they also have a much lower infant mortality rate. Apparently, newborns just sleep very poorly lying on their backs alone in cold, hard cribs rather than nuzzling against their moms' breasts. As a result, the common advice in the US has not only led to skyrocketing cases of postpartum depression, but also delayed milestones such as head lifting, plus more cases of plagiocephaly and torticollis.
(that said, as a new dad, I'm also deathly afraid of SIDS so I still stuck by the American recommendations, sleep be darned)
- How much alcohol can a pregnant person drink? (Not too much, obviously, but is a glass of wine a couple of different days in the third trimester okay? Probably, but it varies a lot deoending on which country you're in.)
- When can children start eating green leaves? (I don't know, but even different counties in Sweden have different guidelines on that one.)
- Should infants sleep on their tummy or back? (Definitely on their back. There is no argument there. But when I was an infant -- which is not that long ago, parents were advised otherwise.)
The temperature thing is one I always wonder about.
The WHO claims the ideal overnight temperature for sleeping is 18 degree (C). I lived in Vietnam for a decade and to a rough approximation 0% of the population ever experiences 18 degrees overnight for sleeping. And I imagine it's not too different in much of Thailand, Indonesia, India, etc.
I'm pretty dubious that hundreds of millions, maybe billions, are thriving in "suboptimal" overnight temperatures!
Does the African savanna regularly get down to 18c at night, such that we'd expect that to be some kind of evolutionary equilibrium that just happens to map to (northern) European and North American norms?
Another example is Ureaplasma Parvum which is treated as a serious STD in parts of the world but almost never acknowledged as an STD in the U.S. and therefore almost impossible to get tested for and treated for in the U.S. There’s an entire reddit about it: https://www.reddit.com/r/Ureaplasma/
An Argentinian friend of mine said you get cancer from drinking beverages that are too hot. He sent the Wikipedia page to prove it but only the Spanish version of the page had this information.
Is this another example of culturally specific health "facts" or have I just missed something?
There's been conflicting information about this over the years. The latest research suggests that it may increase cancer risk when combined with other behaviors that themselves increase risk, but it probably has little to no effect on its own.
I think this is true but it's much more of an issue in LatAm countries where they drink mate through metal straws.
In european/North American countries where people normally drink out of ceramic mugs, people generally end up drinking hot drinks at a lower temperature
Yup, pregnancy/childbirth/rearing is particularly rife with these. Western sources suggest that eating sushi while pregnant is little short of stabbing yourself in the abdomen with a sharp knife, Japanese sources explicitly recommend sushi as a light and healthy meal. In the US giving any form of peanuts to babies is attempted murder, in Israel peanut puffs (Bamba) are among the first foods offered.
Many of these are due to cultural contexts. For example, I would trust sushi from 7-11 in Japan over most grocery store sushi in the US.
> Western sources suggest that eating sushi while pregnant is little short of stabbing yourself in the abdomen with a sharp knife, Japanese sources explicitly recommend sushi as a light and healthy meal
Having had someone close go through it with Endo, the pain she'd deal with meant she could barely walk 100m and lost 20kg from being bed bound and unable to eat. Eventually Endo nearly killed this person it was so debilitating and only a hysterectomy managed to restore her life back to her, which obviously brought on early menopause.
Not all Endo suffers get that bad. But there's just no way of knowing if you're going to be one of the unlucky ones.
For QOL if you diagnosed, make some plans. If you want kids ever then make that your top priority, because it can effect fertility, and being pregnant can help.
Even when its seems like its gone, it might come back.
If your country doesn't have free public health insurance, get it and get good coverage, you don't want to be left hanging here.
The operations can really help for a time, but it depends on how good the surgeon is. Find a good one that listens to you.
Endo can gum up things and the scar tissue from ops can gum up your insides, and its a real messy treatment(laser ablation). Ovaries can get calcified etc.
If it gets bad bad - and you'll know what I'm talking about if it happens to you or someone you care about- do not put off getting a hysterectomy. There is no point in suffering in pain month after month and not having a life. If I had to do the last twenty years over again I would have counselled her to get the hysterectomy when she couldn't walk down the stairs without pain, after multiple hormone treatments and ops.
The article sort of glosses over a major distinction regarding the surgical approach to endometriosis -- 90+% of OB/GYNs are trained to ablate (burn-to-destroy) the affected tissue, whereas more recently, a crop of surgeons have begun to specialize in excising a wide area of tissue surrounding the affected tissue. Many times, the tissue to destroy is not on the surface - it is deeply infiltrating what it has adhered to. Burning it is just like cutting grass, it'll come right back. Success rates with excisional surgery are markedly better, but not a silver bullet.
Not to mention the burning creates a lot more scar tissue, which greatly impacts future reproductive prospects depending on where the burning is taking place…
To help support the "retrograde menses is incomplete" discussion; I was involved in a case where a woman had a bone marrow transplant for her CML. She later developed "appendicitis" when but when the tissue sample came to the pathologist, the appendicitis was actually endometriosis. Even more, the endometriosis was XY karyotype, ie derived from the bone marrow transplant. We wrote up a case report.
NB - It is a known phenomena in bone marrow transplant recipients that the donor DNA can be taken up by host cells by unknown mechanisms, so it isn't a guarantee that the endometriosis was developed from the transplanted bone marrow.
It's one thing to know, in theory, that stem cells can end up in strange places after transplantation, but to see that play out in something as enigmatic as endometriosis really underlines how little we know about the underlying mechanisms.
It was surprising to me when I saw the cells under the scope when I expected appendicitis! The karyotype was just for fun, but the XY testing was quite unexpected.
My girlfriend has endometriosis, I hadn't really read much about it until now, thank you for writing!
I think this is a story too common in women's healthcare.
It's often massively underfunded and underesearched, another symptom of the fact our society had not let women into STEM/politics for decades, and continues to erect barriers to encourage them not too.
I like the fact you spelled out the incentives for PhDs to do so at the end ;). Would be great!
Well outside of breast and ovarian cancer for obvious reasons, most mouse models tend to be male to eliminate the variable of the hormone cycle. But if some effect is actually influenced by that cycle you just ensured you will never find it. I’m also not sure how similar the mouse hormone cycle is to humans.
I had to gently chide a surgeon who came out in the middle of a friend's hysterectomy (and bonus ovary removal) to do a kind of "drive by, not expecting any kind of feedback" picture show in the middle for not having a plan on adhesion barriers. He hadn't planned on doing them!
I pointed out her history (or hystery, heh) and the kinda obvious gluey, webby bits in the pictures (they're quite visible once you look at enough of them).
Then I grilled him on which of the then-three brands were on the market and which were had on hand. Dude acted like he was just yanking a bad video card on a Friday afternoon, which I found less than optimal.
I was not surprised when, post-surgery, the rest of the staff attempted to hustle us out the door. I had abort their well-rehearsed ejection procedure to get aftercare instructions ... and to make sure the scripts had already been called in ... and then to get the follow-up appointment cemented and the "oh shit something has gone wrong" post-surgical emergency contact information. I suppose in the future they will have a kind of water slide from the recovery room into the parking lot, and they just will aim for the open passenger-side door.
Indeed, very interesting! I suspect readers who enjoyed this may also enjoy this recent dive into the prostate which was shared here ~7 weeks ago: https://news.ycombinator.com/item?id=43801906 . It has a somewhat more hopeful and dare I say, happier ending
Interestingly, the mechanism in the "prostate" article also refers to the reversed blood flow. It is not the same as retrograde menstruation, but it kind of rings a bell to me as non-biologist.
Readit News
The New York Times used to run a series of medical case studies in their magazine, and over and over again the story was essentially that the patient sought care from primary care and specialists, without success, and were generally miserable, until a miraculous event happened, like a friend's aunt knowing someone at Johns Hopkins, and that doctor having the time to think about it. The problem was incredibly evident for female patients.
I don't know whether this is a result of doctors being burned out by the system that they work in, a certain doctorial arrogance that diminishes their listening skills, over-reliance on heuristic diagnoses, some kind of ignorance of womens' conditions, or even a kind of medical misogyny. But it pushes people pretty quickly towards Dr Google and sometimes, sadly, into quackery, and that can't be a good thing.
The cause is pretty easy. Patients aren't treated like mysteries, they're treated like BAU Jira tickets - just get it done so you're on to the next one. The system is built to handle the 90%. If you fall into that other 10%, it won't work well for you. If you have provider companies and insurances pressing you to hit some metric, that's what you have to do. If you are concerned about malpractice, then you have to just read from the Epic system. No surprise we're in this situation.
We need more doctors. The nation has grown, our medical professionals and courts must scale up. Automation isn't going to solve everything.
All of them read the first page of my medical records upon being admitted to a hospital in January. Not a single one of them read anything after that and it shows. One of them was stricken and amazed that I was walking into his office without aid or an oxygen mask.
Gives me great confidence in their ability to pay attention to detail.
It isn’t that it’s easy to do all a doctor does. But their training and knowledge shines in the 99th percentile case except they never exercise it there so you can usually get there with Google.
“Oh but an LLM will guess the common case and never think of the rare!”
Yeah but so will a doctor given 10 minutes on it. They’re not exactly going to House MD you. You’re gonna die.
Imagine if asking a specialist the time meant they had 3 broken clocks on the wall and picked one.
That’s pretty much how initial medical diagnoses are done.
Insurance companies then limit what’s types of care/investigation can be done for various conditions.
Doctor may know that medicine X will work best but insurance demands that Y and Z be first tried before covering X. Same with tests.
I’m tired of it.
A family member ran into this with a brain tumor, which for a patient presenting with a headache is a 1% likelihood. Slightly elevated blood pressure was the focus in that case. Persistence and a subtle symptom changed triggered the CT scan that ultimately led to the diagnosis about 8 weeks later. Unfortunately with melanoma, 8 weeks is a long time.
Ultimately there’s no right answer. 99% of people with headaches have high blood pressure or other “normal” causes. Sending 1,000 people to CT to identify 5 tumors will cause 50 other complications.
Think of doctors like a helpdesk in a big company. Open a ticket, but work your network to get someone who isn’t dumb to think about it. If you’re too poor or don’t have friends and advocates, your outcome will be no mas.
This is something frequently missing from discussions like this.
Something that has a fairly small per-patient risk like a CT scan, causes far more pain than reduced missed diagnoses would solve if applied across the whole population.
asking as someone that had it
The reason the “family member or friend who knows someone who can recommend a doctor” seems to work well, in my experience, is because that doctor then has some motivation to actually care, as the patient is connected to someone they already know and care about.
Our medical system financially incentivizes doctors to see as many patients as possible, but doesn’t financially incentivize actually making them better. For that, the system just hopes that doctors will care, without giving them the room to do so.
We have progressed fantastically on the common medical conditions, but once you get into more rare stuff it gets a lot harder. Doctors have huge breadth of knowledge, but the sum of human medical knowledge could never fit into a human brain, even within a specialty, and even then there's so much we are not even close to understanding or knowing.
And for rarer stuff that is just getting discovered and learned about, there will only be a few specialists who are the ones figuring it out. That's why you go to lots of doctors that offer nothing, then a hint directs you to the doctors that are in the cutting edge of expanding knowledge.
Even if we financially incentivized each and every doctor to spend hours or days trying to find out what's going on with a patient that the doctor can't help with their current knowledge, it's quite likely that doctor could never help on the basis of a single patient. Medicine advances through discovery in groups of people and transferring knowledge from the results of one patient to others, incrementally. A single patient is far less likely to lead to advancement than a doctor having a group of people with similar symptoms.
The financial incentive for this discovery comes from research hospitals that collect these difficult cases, and obtain federal research grants from the National Institute of Health that allows them to do research and publish papers and share the knowledge. The proposed budget for the US drastically slashes this, greatly reducing our ability to advance medicine. And in advance of the budget cuts, the NIH is in violation of current contracts stopping payment, resulting in massive waste as research dies on the vine.
So what I'm trying to say is that the logistics of advancing medicine require grouping patients, and the place where that happens is at research hospitals, not at the local community doctor for everyday care. And our society is choosing, consciously or unconsciously, to drastically reduce access to that type of care.
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It's hard not to be incredibly cynical in the face of things like this. Way more than once have I thought "this is a cruel and unusual punishment" -- wait aren't those prohibited?? Oh right we get around that by making cruelty usual.
https://pmc.ncbi.nlm.nih.gov/articles/PMC9732073/
However, the protocol isn't perfect, and there is probably still room to develop better contrast agents and MR sequences.
>some kind of ignorance of womens' conditions
Some things are just hard. The treatments for benign prostatic hyperplasia suck too. There is no effective reversible pharmaceutical male birth control. Et cetera.
The path to figuring it can be long and sometimes improbably. For example, somebody I know was watching a youtube channel they like, and one of the creators put out a side-video about a short informational cartoon they made about their own journey discovering they had endometriosis -- which also echoed this same diagnostic pattern.
My friend saw something in the cartoon that seemed familiar, decided to go get a biopsy, and voila - a lifetime of pain was finally answered. She was in her late 40s, and decided to just go get surgery and now a few years and a hysterectomy later lives pain free.
I spent over a year going through the Canadian healthcare system, seeing different doctors. Most either brushed me off or implied it was all in my head and normal exercise would fix it (I am fairly active and have a healthy BMI). Even the few who took me seriously refused to run further tests or offer any treatment.
Eventually, I gave up and saw a private urologist. He looked at my results, immediately ordered more tests, and it was obvious from the new data what was going on. He prescribed HCG, and within a month I felt like a different person. Symptoms gone, T levels back in range.
Really wish more doctors took the time to actually listen, especially when a patient clearly isn’t doing well despite "normal" labs.
> T levels back in range.
Were the T levels normal or not?
Some 72 hours later, armed with google, Wikipedia, the rest of the internet, and coffee (with very little sleep). I figured it out.
But when I called Hopkins they said “you are wrong, can’t be that. Stop using the internet, you have no idea what you are reading and you are only scaring yourself”.
30-or-so specialists from a variety of top US hospitals kept saying the same thing (with the addition: “if Hopkins says you are wrong, you are wrong”.
But then, we saw a specialist in a world top-10 hospital outside the US, who immediately agreed with my diagnosis. Treatment started the following week (only 3 months lost) and the condition started to resolve.
I kept in touch with the doctors I had seen before. They didn’t care. Some thought it was still the wrong diagnosis. Until a year later, near complete remission - and pathology of a resection - confirmed it 100%
Modern medicine is part science, part craft, part cult. You tend to meet the cult aspect more often with rare or hard-to-diagnose diseases.
I am sorry to hear that. This is the path once upon a time I would of taken. Just assuming it was bad to be Dr Google as I'd learned from a young age. Let the doctors do their job and all that. Now I am the complete opposite.
My neurosurgeon HEAVILY pushed me to start "googling" and "reading whatever you can" and straight up told me not to trust general practitioners as the vast majority of them are woefully ill equipped to deal with anything I am dealing with.
Thank god I took his advice, because I almost did the same thing again. For months GP's were telling me my new and expanded pain was the same old SCI injury "flaring" my CNS, and that I should just take more drugs/do more physio and literally I got asked "what do you want us to do? Take the painkillers like we do told you"
Well, three specialists (and two neurosugeons later) its NOT the existing injury, its severe bilateral cervical radiculopathy from where my cervical spine is disintegrating on the layers above and below my original fusions and its not going to magically get better by throwing even more drugs at it, or moving my physio sessions from 3 times a week to 5 times a week.
Once upon a time, I would never have said this, not deeming myself to know enough to possibly say it, but I have met now a lot of very useless doctors, like just outright incompetent.
Every couple of years, I get renewed energy to try the search again. It lasts for a year or two before I run out of steam, give up, and decide to live with it, because I'm easily 6 figures into trying to be able to walk without pain and not be laid out with a headache every month.
100% of doctors started with telling me the problem was my weight. I lost 50 lbs and all my symptoms got worse, so they pivoted to telling me it's psychogenic. All of them. But I've been through all the recommended types of psych treatment too, and a few experimental ones besides.
In point of fact, I cannot convince anybody who might know to care enough to find out, and it seems unlikely I ever will. There doesn't seem to be any good reason I should be stuck with these pains, but there are only so many times I'm willing to try the same things, expecting different results, because this doctor thinks all the other ones must have been too stupid to rule out the obvious causes.
One of my best friends faced a similar struggle and took things into her own hands.
Through a lot of trial and error and a lot of studying, she's been able to overcome most endo symptoms and has started her own program where she teaches other women how to do the same.
I'd love to connect you to her if you want!
She's already helped around 30 women with similar struggles. Some have managed to get rid of bloating in a matter of weeks, one even has Crohn's disease and for the first time in 14 years woke up without any stomach pain.
My friend's program isn't a "magic pill" obviously but it sounds like it's worth a shot.
Let me know :)
The N-Acetyl Cysteine Protocol Morning and Evening: 600mg NAC Oregano Oil (min. 40mg Carvacrol) Black Seed Oil (1 teaspoon)
For the natural oils, my strategy is to mix 235ml Nature's Way Black Seed Oil with 30ml Natural Factors Oil of Oregano, take one teaspoon morning and evening. This mix delivers the prescribed amount of carvacrol per teaspoon. Most of my problems were with the upper respiratory tract and taking it orally this way coats the throat well.
The other intervention that had big effect on my health in the last few years was adding a daily mineral supplement. I'm an avid tea drinker and it turns out that can interfere with your absorption of minerals, plus with the nutrition crisis it is not clear if our produce even has enough for optimal health. I simply take the maximum recommended supplementary dose of Mg, Ca and Zn.
Also, check your Vitamin D levels if you haven't. If you have been dealing with this for 12 years, I assume you have already ruled that out, but I'm mentioning it for completeness. Good luck.
P.S. One last thing to mention - try the carnivore diet for a bit (if you haven't, of course). I know people who have found it a big help, but then again for some it didn't do anything. Give it a month, see how it goes, obviously stop immediately if you get serious symptoms.
To the first PT, the only signal they have is that I didn't come back. If their assumption is it was because I got cured, they will probably give the same wrong diagnosis the next time someone shows up with the same symptoms.
“Happy families are all alike; every unhappy family is unhappy in its own way".
To sum it up, not much to write about ones that went to primary care and were handled properly.
99 times out a 100, if the doctor thinks it's something else, it's not.
So when someone comes in who doesn't fit that mold, they get shuttled around to a bunch of doctors until it gets bad enough someone is forced to think outside the box.
We just took it for good money ans she is treated since with reasonable results. But it may be something else.
I wonder if there are better tests today.
For lulz you could add "or future"
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Did the NYT evenly select male and female patients? Knowing about their political leanings, I highly doubt it.
One of this is sex during menstruation. I was instructed that it was not a problem but in Japan they specifically instruct that it is discouraged because there might be a link with Endometriosis.
If you try to Google if sex in menstruation can lead to infertility you are going to find little information in English, but you are going to find many hits in Japanese.
* In the UK you should not start solids before 6 months, in France you can start at 3, and should at 4.
* Baby bed room temperature: in the UK 16 degrees Celsius, France 19 degrees, in the nordics you should have them sleep outside while I've been told that in Hungary 25 degrees is considered optimal.
Don't underestimate how much of health science is embedded folklore knowledge by people who thought they managed to extract signal from noise with a lot of confounders, especially if the patient is not sick or cannot express their subjective experience.
(that said, as a new dad, I'm also deathly afraid of SIDS so I still stuck by the American recommendations, sleep be darned)
- How much alcohol can a pregnant person drink? (Not too much, obviously, but is a glass of wine a couple of different days in the third trimester okay? Probably, but it varies a lot deoending on which country you're in.)
- When can children start eating green leaves? (I don't know, but even different counties in Sweden have different guidelines on that one.)
- Should infants sleep on their tummy or back? (Definitely on their back. There is no argument there. But when I was an infant -- which is not that long ago, parents were advised otherwise.)
The WHO claims the ideal overnight temperature for sleeping is 18 degree (C). I lived in Vietnam for a decade and to a rough approximation 0% of the population ever experiences 18 degrees overnight for sleeping. And I imagine it's not too different in much of Thailand, Indonesia, India, etc.
I'm pretty dubious that hundreds of millions, maybe billions, are thriving in "suboptimal" overnight temperatures!
Does the African savanna regularly get down to 18c at night, such that we'd expect that to be some kind of evolutionary equilibrium that just happens to map to (northern) European and North American norms?
US: essentially everyone
Most of Europe: only recommended for age 65+ or otherwise at risk
Full background: https://www.reddit.com/r/Ureaplasma/comments/qavqf1/the_urea...
Is this another example of culturally specific health "facts" or have I just missed something?
https://www.mskcc.org/news/burning-issue-truth-about-hot-dri...
In european/North American countries where people normally drink out of ceramic mugs, people generally end up drinking hot drinks at a lower temperature
This is not the case, peanut puffs are a common early solid food in the US. Before that there are allergen mixes you can add to milk/formula.
All the recommendations I saw when my kid was born said early exposure to allergens is good to reduce chances of allergic reactions.
> Western sources suggest that eating sushi while pregnant is little short of stabbing yourself in the abdomen with a sharp knife, Japanese sources explicitly recommend sushi as a light and healthy meal
https://emishia-clinic.jp/low-dose-pill/on-my-period-sex/
Not all Endo suffers get that bad. But there's just no way of knowing if you're going to be one of the unlucky ones.
For QOL if you diagnosed, make some plans. If you want kids ever then make that your top priority, because it can effect fertility, and being pregnant can help.
Even when its seems like its gone, it might come back.
If your country doesn't have free public health insurance, get it and get good coverage, you don't want to be left hanging here.
The operations can really help for a time, but it depends on how good the surgeon is. Find a good one that listens to you.
Endo can gum up things and the scar tissue from ops can gum up your insides, and its a real messy treatment(laser ablation). Ovaries can get calcified etc.
If it gets bad bad - and you'll know what I'm talking about if it happens to you or someone you care about- do not put off getting a hysterectomy. There is no point in suffering in pain month after month and not having a life. If I had to do the last twenty years over again I would have counselled her to get the hysterectomy when she couldn't walk down the stairs without pain, after multiple hormone treatments and ops.
NB - It is a known phenomena in bone marrow transplant recipients that the donor DNA can be taken up by host cells by unknown mechanisms, so it isn't a guarantee that the endometriosis was developed from the transplanted bone marrow.
I think this is a story too common in women's healthcare.
It's often massively underfunded and underesearched, another symptom of the fact our society had not let women into STEM/politics for decades, and continues to erect barriers to encourage them not too.
I like the fact you spelled out the incentives for PhDs to do so at the end ;). Would be great!
Funny, my experience is the absolute opposite of this claim.
Also, I could be wrong but I'm pretty sure breast cancer is the single most well-funded areas of cancer research.
There's a toolbox a certain type of person likes to reach for even when the evidence is inconsistent.
I pointed out her history (or hystery, heh) and the kinda obvious gluey, webby bits in the pictures (they're quite visible once you look at enough of them).
Then I grilled him on which of the then-three brands were on the market and which were had on hand. Dude acted like he was just yanking a bad video card on a Friday afternoon, which I found less than optimal.
I was not surprised when, post-surgery, the rest of the staff attempted to hustle us out the door. I had abort their well-rehearsed ejection procedure to get aftercare instructions ... and to make sure the scripts had already been called in ... and then to get the follow-up appointment cemented and the "oh shit something has gone wrong" post-surgical emergency contact information. I suppose in the future they will have a kind of water slide from the recovery room into the parking lot, and they just will aim for the open passenger-side door.
Your water slide to the parking lot is an apt description—-I can 100% believe people wanting such a thing.