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.
Yes, unfortunately we've made doctors the gatekeepers and they don't want more doctors because that will eat into their income. This happens with every single licensed occupation where the license body is run by members of the occupation, with the possible exception of bar associations.
My theory on that one is that the more lawyers you have in society the more lawyers you need because lawyers do a great job creating work for one another (both through litigation but also through legal documentation which needs to be read and interpreted by other lawyers).
The vast majority of doctors support increasing the number of doctors. Most doctors are not members of the AMA and many disagree with their positions on many subjects. The main issue with the shortage is the lack of funding for residencies that is mostly paid for by Medicare and grants. Medical schools don't want to increase the number of students if they won't have slots to finish their training to become doctors. The limits you're talking about are comparatively minor issues as the limits imposed on MDs have led to more DOs. And what nobody wants to talk about are the thousands of slots that go to international medical students, the majority of which do not stay after training.
They currently have a senate bill to increase funding and incentivize the most needed specialties (GP and psych). We'll see how that goes. At this point, it feels like interest in being a doctor has diminished - there's too much training, many specialties don't pay well enough to justify the delayed earnings and costs, the hours can be miserable, and it's a nightmare to deal with all the regulations and legal aspects.
The main issue with the shortage is the lack of funding for residencies
No, that’s the proximate issue. The main issue is the requirement of residencies for all doctors in the first place. In particular, I’m referring to doctors from other countries who may have years or even decades of experience practicing medicine being required to compete for residency spots. These doctors infamously end up driving for Uber instead of practicing medicine.
My mom was one of those lucky few doctors that was able to redo internship and residency after moving to the US. When she first arrived she cleaned houses and worked as a waitress while awaiting entrance into a program. This was the early 80s. Of her friends, she's one of the few who was able to go through the gauntlet and become a doctor in the US. Most became other types of medical workers, including my father who became a respiratory therapist.
Contrast that to my cousin who moved to Australia and was quickly accepted as a practicing physician.
If I trained at a community hospital in Nepal, am I going to need US residency standards? We don’t know. That’s why we have standard board exams and admission pathways that all US physicians need to follow. We should not compromise on that.
We can expand US MD and US DO schools and fill our thousands of unfilled Family Medicine, Internal Medicine, and Pediatric Subspecialty residency slots first!
Board exams are fine. You can sit thousands of candidates for those. The issue is residency slots which are the main bottleneck. Why should a surgeon with 20 years of experience working in Mumbai be forced to become a resident alongside fresh-faced med school grads in the US? It’s a huge problem when it’s cheaper and safer to fly to India for surgery than to get the same surgery in the US (from a less experienced surgeon).
It’s the tyranny of the status quo. Milton Friedman was complaining about this more than 50 years ago.
I think this is a fundamental disagreement, not tyranny of the status quo. We have a functional medical training pipeline already that produces (arguably) the best physician population in the world. Let’s invest there.
The surgeon from Mumbai can come in and prove their worth through a surgical residency. That’s completely fair.
"Why should a surgeon with 20 years of experience working in Mumbai be forced to become a resident alongside fresh-faced med school grads in the US?"
Perhaps you could have them in some accelerated program, but i think it makes a lot of sense to require doctors to train or prove themselves in the specific country/region using the standard practices, tools, etc customary there. I wouldn't want a US doctor operating on me in India since they're likely to make assumptions and recommendations for treatment that overlook local practices, resources, etc.
In my opinion we need to elevate doctors and invest heavily into more nurse practitioners and the like. I don't think you need to see a doctor all the time, for procedures or surgery yes, or if you need someone to actually investigate something.
But there is no point in pretending doctors are going to surge, the current administration is trying to make being a doctor harder, not easier. Doctors also avoid certain fields because it doesn't pay enough. The supply is also artificially restricted. It's a system so fucked that it's better to ignore it and pump out PRNs
> In 2013, an estimated 142,000 persons died from adverse effects of medical treatment, up from an estimated 94,000 in 1990.
Careful what you wish for!
And, imo, an awful lot of deaths are due to issues that cannot be classified as caused by doctors - eg dosage error over time, something that mitigates symptoms but allows the underlying to deteriorate, etc.
I’m very ready to have a conversation about whether or not there is a point where we should stop advancing healthcare because people probably shouldn’t be immortal, but doing it by making your healthcare workers struggle under the extreme weight of all the patients they need to care for probably is not the approach.
I simply don’t think we have the medical knowledge necessary yet to know what the “right” number of health care professionals is.
Most premature death in this country is from chronic disease. It's nearly impossible to get a PCP in many parts of the country. Gastroenterology is like a four month wait here.
At this rate, it might be easier to train ChatGPT for better diagnostics performance and give it access to health records than to untangle decades worth of legislative and institutional inertia that prevents "more doctors".
>Up to 25% of women have endo, in some communities at least.
I feel like that's a relatively novel insight. These days I hear about endometriosis once a month or so, mostly because of outspoken women advocates. I could swear I've never heard of endo before 2020.
As an example, the Australian National Action Plan for endometriosis is from 2018. Perhaps the currently practising generation of doctors did not have this kind of awareness during their training, and the next generation will fix it?
I think because it's seen as gyn health (though endometriosis can occur in men in rare cases), people often don't feel comfortable talking about it. Relatedly, pregnancy complications weren't really on my radar until I started working in the emergency department and discovered just how common they are.
The studies are wild. The reported range of affected individuals is 2-50% depending on which study you look at. While genetics are the main risk factor, there are all sorts of environmental risk factors that have been linked to it, especially in uetero. Many of those things are highly common such as BPA, PFAS, dioxins, and cosmetic use.
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.
I discovered a friend’s chronic medical issue that two VA specialists and a PCP couldn’t figure out using an LLM health project that had been posted here. Works when it works, n=1. Certainly, don’t trust the robot, but it doesn’t hurt to rubber duck debug with it to find blind spots. Fancy search engine sometimes is right (although it can lie too!).
Language models are really good at free association tasks, such as semantic fuzzy search. Next token prediction is among the worst possible ways to use them (although if there's no other obvious way of getting the information out of the model, it works in a pinch).
I think a great use case for AI is to act as triage for a new case so that it can send you to the right specialist and have them evaluate you. It could potentially remove the need to see a GP for a referral to a specialist, thus freeing the GP up to spend more time treating others.
You don't need a GP for referral to a specialist currently. You just have to pay. It's what I do.
But I understand what you're saying. Insurance gates these but could do so with their own tech rather than relying on the third party. Could help with keeping loss ratios at the minimum.
>Insurance gates these but could do so with their own tech rather than relying on the third party. Could help with keeping loss ratios at the minimum.
I work in insurance. In my experience, the fact that you have to go to the doctor for a referral discourages people from getting said referral.
So the tradeoff is that you would get fewer referral-specific visits (i.e. person going to their GP to get a specialist referral) at the likely expense of more specialist visits.
In my experience (arthritis), specialists typically won't take direct appointments without a referral. They don't want to triage the 90%, and most offices are booked weeks-to-months in advance...
I've seen a lot of doctors who insist patients must be making up things when they say "but XYZ", and my question becomes...so what?
If someone credibly lies to you and gets codeine or ritalin or something once or twice...that's not really significant, in terms of negative outcomes.
If someone lies to reach a medical professional, then you treat them like any other bad customer interaction and stop doing business with them after some point.
You're going to have to choose, denying people in need directly, or doing it indirectly because other people game the process and get in the way of those in need.
The length of the queue doesn't determine the length of the priority queue for urgent issues necessarily, and more accessible preventative care could hypothetically go a long way toward reducing the demand on first-contact touchpoints in the US's healthcare.
What would you propose as an alternative? Healthcare costs are already high. Imposing step therapy requirements to try cheaper treatments first is one of the few ways that insurers have to control costs. And the cheaper treatments do work well for many patients (or they recover on there own just due to time).
Look at any nation that doesn’t have these unbelievably, ridiculously, insanely high costs. This isn’t an unsolved problem, nor is it a sensible one.
What’s with the stupid “here’s the cost” bill you get, followed by the insurance company just, like, deciding things are a different price? What’s with the unreasonably stupid “out of network” medical charges? What’s with the fact that you can walk into a pharmacy and request a discount, but they can’t tell you about it once the transaction has been rung up?
There are SO MANY stupid rules in this system, I literally cannot imagine a system with more low-hanging fruit.
Many of the nations with lower healthcare costs also have step therapy requirements, or simply don't make the most expensive treatments available at all. That is literally one of the cost control mechanisms they use.
Ok, that’s fine? We still don’t have an easy time accessing the cheap and simple stuff here. I have to keep going in to get a doctor to approve a non-controlled substance I’ve been taking for a decade. It has no habit-forming effects. It has no use as a precursor. It has no use recreationally. It’s a worthless, ongoing expense.
Why are you defending this awful, awful system? Have you had even one good experience? Not “well, that wasn’t awful”, but truly one GOOD experience?
Hospitals here don’t even follow up to see if your medical care was effective.
Hell, I’d even take Australia’s approach, where basic stuff is free and you pay for additional coverage.
AI would be deployed to behave like the median doctor (at best - or maybe the lowest-common-denominator) to avoid blowing up costs with 99%-likely-to-turn-up-nothing hunts for super-rare conditions.
Today you can try to cajole your human doctor into listening more, or ordering more tests, or considering things you heard online or from acquaintances. AI will be guided to take that into account less because a doctor being more sympathetic and bypassing "standard practice" is an expense caused by humanity that the machine can be trained to avoid.
Today you can go across town and try your luck with another doctor. If it's all AI, you'll just repeat your story to the same basic model and get the same basic dismissal.
The problem arose from trying to make people behave like machines in order to save money. Making a machine behave like a machine ain't gonna help.
You need to shift the goal from "saving money" to "helping people." AI doesn't do that.
Nah AI can easily be programmed to be much more patient and investigate edge cases and figure out personalized solutions thoroughly and provide bespoke service. This problem would be solved, though of course there are other issues with biases of the bureaucracies.
OpenAI doesn't lack investment capital. What they still don't have is a good source of high quality clinical data. And this isn't just a matter of buying access to deidentified patient charts from some large health system. Most clinical data quality is kind of crap so using it directly for model training produces garbage output. You need an extensive cleansing and normalization pipeline designed by human clinicians who understand the data at a deep level.
Absolutely true, but is there a system that works perfectly that I can use now that has all that that isn't AI?
In the absence of such a thing OpenAI is already quite good, some theoretical perfect shouldn't be trotted out as a counter if it doesn't actually exist.
There is a massive difference between being able to discuss symptoms and actually being diagnosed. Diagnosing edge cases is precisely the kind of thing that a generative AI needs massive amounts of data on. Where is this magical data source that violates doctor patient confidentiality? And all the doctors just contribute to it and everything is fine? Come on…
How? I'd expect them to already have standardized lists of the most useful next thing to investigate given what's already known, and a modern "AI" would actually be worse at that than some sort of solver engine with a database of costs/risks (for tests) and conditional probabilities.
Maybe if they're still using (digitized versions of) paper flowcharts things could be improved, but the most powerful tech should be old-school stuff rather than modern "AI".
No normal person would actually be able to use a specialized solver database, the woman in this story would already be dead before the guy figures out that such a thing exists and manage to make an account. https://x.com/deedydas/status/1933370776264323164
LLMs already work fantastically with pretty good UX.
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.
Not a doctor, but to my understanding there are two main issues with CT scans in this context: the radiation from the scan itself, and the fact that it can lead to "incidental findings" which then might cause a cascade of other, more invasive tests with risks of their own.
CT scans are super valuable for all sorts of things, and the radiation dose/risk for an individual is small, but at a societal level using them freely as a "might as well" kind of test results in a lot of excess radiation exposure. This recent research suggests up to 5% of cancer diagnoses each year could be from CT scan radiation: https://www.ucsf.edu/news/2025/04/429791/popular-ct-scans-co...
The "incidental findings" side is an interesting dilemma: CT scans often reveal other stuff beyond what they were initially ordered for, but which can't be identified solely by the CT scan itself. So, if something looks a little weird on the CT scan it creates an imperative to figure out what it is, so there are additional tests, each of which carries its own risks and also consumes limited resources that might otherwise have been used for people with more definitively concerning findings. https://en.wikipedia.org/wiki/Incidental_imaging_finding
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.
> but once you get into more rare stuff it gets a lot harder.
Endometriosis is not rare. But it's a female disease. You will be shocked to know how many of diseases that women have to deal with are both quite common (some estimate up to 10% of women may have it), and completely ignored by medical community (which is still overwhelmingly male)
You are correct, and my language was not very helpful there!
The article shows that 10% is a low estimate.
It is not completely ignored, but research is underfunded nearly to the degree that COPD is underfunded.
I think we need to distinguish two things here too: the bedside manner of doctors and whether they are willing to present the options that could lead to diagnosis, and then the amount of medical research that could give doctors some tools to better manage endometriosis.
I get a tingle in my balls? Here's an expedited ultrasound that we can do tomorrow. We can get you in for a blood test for cancer markers in two days.
My whole pelvis hurts when I have my period? Here's a motrin and an ibuprofen. Come back if it doesn't stop bleeding after a few days.
Like an effervescent abscess, the difference in treatment between males and females remains to this day. It's not even particularly hard to find female doctors that will outright dismiss symptoms in female patients because that's what they were taught.
> I get a tingle in my balls? Here's an expedited ultrasound that we can do tomorrow. We can get you in for a blood test for cancer markers in two days.
I guess I must not be man enough to get the expedited treatment. Instead, I got a spinal cord injury and early stage bowel cancer.
I wonder how as a man, I can start convincing doctors in my country to give me this treatment all the other men are getting behind my back. Maybe next time I should start with dropping my pants first and hanging dong so they know im on their team.
I really regret using "common" here, because the issue with endometriosis is the complexity of the disease, lack of understanding, and lack of clinical management tools. Not the rarity.
Most doctors who do this type of medicine wouldn't work with family members. Not many fathers, uncles would work on their kids, nieces or mothers and not many mothers either. You would go to a different doctor if possible.
"They don't care because it's doesn't affect them personally" requires "they don't care about other people".
My general impression from half recalling whatever stories about new medical discoveries, is that the motivation is more often a problem that a family member of the researcher has rather than a problem that the researcher personally has.
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.
I see this view sometimes and it really annoys me.
The number of doctors and nurses that attempt to keep people chronically ill rather than curing them if possible, is essentially zero. People get into that field frequently because they actually care, and people that actually care are the most likely to not follow a vague profit incentive that actively hurts people.
Similarly, most medical researchers would love to cure diseases, and actively seek out jobs where they do so and will object if asked to suppress curative research.
To the extent that what you describe exists, it is limited to MBA people at insurance companies and big pharma determining what gets funded for research. While exceptions always exist, the incidence of that attitude among the people actually doing the work is very close to nil.
I think we agree on this point almost entirely. But let’s not pretend the doctors, nurses, and researchers are running the show. This attitude of mine persists because of the way the insurance companies run the system: profits first, patients last.
A chronically ill person is a risk to an insurance company. They could turn into a huge hospital bill for an extended stay any day now. Or, worse, become a permanent disability recipient.
A healthy person is a huge asset to an insurance company. Collect premiums for decades before they need much of any disbursal! They're still likely to be expensive at end-of-life, but you've profited WAY more from their initial healthy years.
(This, of course, is why insurance companies want to consider health in setting premiums, and why it's SO IMPORTANT that the government not allow that and keep things group-based. Because then you have the incentive to help the unhealthy people instead of just "milking the unhealthy people.* I pay the same as my coworker for my insurance. The insurance does NOT want my chronic condition to make me much more expensive to them than my coworker. They'd much rather it go away. Sadly, nobody can do that today.)
What the insurance companies don't* have is the incentive to actually push doctors and facilities to spend more time and money on looking for rare issues for unhealthy people. Because the searching is expensive, and there's a high risk it won't actually find a magic bullet.
So they'd rather have the median patient go from unhealthy to healthy, but if we want them to invest more in the long tail, it's gonna have to come from regulation.
And targeted investment in better detection*. But better detection is harder to sell than "expensive treatment drug" so again. Might need to get the state involved.
There are a lot of doctors and researchers running research arms of large, well funded institutions. Sloan Kettering for example.
I'll grant you that that is a low percentage of the total US medical research spend. But also, most of the world does not have the same profit motive; in most Western countries, a cure is categorically cheaper for everyone than a chronic illness, because healthcare is paid for by taxpayers. And countries besides the US do plenty of medical research.
If the hypothesis were true that there exist cures to many diseases that simply haven't been explored due to profit motive, then I would expect countries without that profit motive to have a higher proportion of cures among their medical.discoveries than the US. I don't believe that is true though.
Basically my point is that the effect you mention likely has little actual impact on the larger medical field.
There's pretty universally much more demand for doctors than supply. And insurance companies, the other major power that's, to an upsetting degree, "running the show" would love for everyone to be perfectly healthy so they can collect premiums and never pay out.
That's not actually a thing. A very high portion of premiums always has to be paid out. Not just because the regulators said so (IIRC the requirement is a 90% or 95% loss ratio?), but because they'd be undercut by a competitor long before they got in regulatory trouble.
Taking the strongest plausible interpretation of the comment you're replying to, systems are not the people who work in them. It's perfectly possible for a system to be tuned to something other than pure patient benefit, while the people who work inside that system are trying to bend it towards that.
This is totally untrue. Slow rolling early care to raise total dialysis likelihood was sufficiently widespread. Not the majority of docs but sufficiently large numbers. It is defensible medically to do that because you don’t need to treat something that hasn’t happened yet.
How widespread is "sufficiently"? Especially since you also mention it's a minority? I've not heard of the specific example you mention, do.you have more details?
I feel this is more a societal failing than a medical one. Most people don’t want to take better care of themselves: eating better, portion control, more regular exercise, etc. Too hard.
People want a pill to solve the ailments they have.
You can't solve your health issues without paying money.
If you have high cholesterol and you decide to make lifestyle changes, you still have to go to the cardiologist. Because you have absolutely no idea if you actually lowered your cholesterol.
A big fallacy is people thinking they know if they are healthy or they know about their bodies. You don't. Even if you live a very healthy lifestyle, you still have to go to the doctor. You still need screening.
Nonsense. The clinicians working in the healthcare system have zero incentive to keep patients chronically ill. This isn't a matter of keeping patients coming back: most doctors already have more workload than they can even handle.
Most chronic diseases are primarily caused by lifestyle choices. This is largely outside the scope of medical practice. A doctor can prescribe metformin to treat type-2 diabetes and a statin to reduce cholesterol but they can't force you to clean up your diet and get some exercise.
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.
I would also like to know this. And “diagnosis” of “hypo gonadism” is a little hand wavy here. HRT is going to reduce “brain fog, fatigue and no libido” no matter what you have (or don’t have), just got a find a doctor that will do it for you. Take your health into your own hands
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.
Does her program have a website or something where I could learn about it and find her contact info?
I've dealt with a handful of such specialists before, each of which thought they had discovered something everyone else was missing, so before I consider shelling out another five figures on hopeium, I'd love to read/listen to anything she's said publicly about what she's doing.
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?
I am a woman. I have never used birth control of any kind. (I know, I know. Unicorn. But I'm long-term celibate for personal reasons, so unexpected pregnancy is not a concern.)
It is a bone of contention with my gynecologist that I am not willing to suppress my (screened and confirmed to be) perfectly healthy "ovulation axis" on the off chance it might decrease my headaches.
IIRC the birth control and migraine relationship is twofold: (1) unlike traditional BC pills, mini-pills don't contain estrogen, which is beneficial because of the link between estrogen and migraine frequency; and (2) unlike most traditional BC pills, most mini-pills are "monophasic," which means you have less dramatic hormonal fluctuations throughout each cycle.
I do know some people see an improvement on migraines even on traditional BC, but the hierarchy is pretty much: nothing < traditional BC < mini-pills.
I can definitely say that the couple cycles where a NaPro doctor had me supplementing both estradiol and progesterone at different points of the cycle led to the most incredible pain I've ever experienced. I fired the guy rather shortly thereafter when he ignored my existing meds list and wrote me a prescription for the headache that would have landed me in the hospital were I not a careful reader, so I don't know if it might have gotten better if it were tuned in better.
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.
Thanks for the suggestions. I've done extensive trials with the minerals and vitamin D, and both hair and serum tests keep saying that's not the problem.
I'm on NAC too, but oregano oil gave me the worst heartburn I've ever had in my life. Do you think the black seed oil might neutralize it on that front?
I did carnivore for about three weeks before my body was absolutely shutting down. It was catastrophic for me. I did spend 20 months on an elimination diet of slow-cooked meat and boiled vegetables (exclusively, without a single cheat, which was pretty brutal), which helped clear up some intestinal issues that were misdiagnosed as ulcerative colitis, but it didn't do a thing for the headaches.
It's somewhat reassuring that most of the out-of-the-box suggestions people have are things I've already tried, because at least it does confirm for me that I've done a decent job of covering my bases, but alas, the pain persists.
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.
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.