Endometriosis is an interesting disease(owlposting.com)
owlposting.com
Endometriosis is an interesting disease
https://www.owlposting.com/p/endometriosis-is-an-incredibly-interesting
295 comments
"I don't know whether this is a result of..."
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.
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.
Up to 25% of women have endo, in some communities at least.
We need more doctors. The nation has grown, our medical professionals and courts must scale up. Automation isn't going to solve everything.
We need more doctors. The nation has grown, our medical professionals and courts must scale up. Automation isn't going to solve everything.
We need more doctors.
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).
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.
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.
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.
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!
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.
[1] https://youtu.be/UmVrfbfKBIk
It’s the tyranny of the status quo. Milton Friedman was complaining about this more than 50 years ago.
[1] https://youtu.be/UmVrfbfKBIk
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.
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.
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
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
We need more of all healthcare professionals. Nurses and CNAs are getting run ragged just the same.
Have you heard of Iatrogenesis?
https://www.wikipedia.org/wiki/Iatrogenesis
> 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.
https://www.wikipedia.org/wiki/Iatrogenesis
> 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.
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".
AI hallucinating an art project is one thing…but medicine…?!?
Heaven help us.
Heaven help us.
>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 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.
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.
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!).
(Bone tuberculosis)
(Bone tuberculosis)
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).
Which project did you use?
Which project did you use?
Aw, it's next-token prediction. This is not generally useful, only a "last resort" research tool.
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.
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.
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.
Strange, I have conditions that require specialists, including a very rare type of specialty.
Never had a problem just calling them up and making an appointment. Insurance never cared either.
Never had a problem just calling them up and making an appointment. Insurance never cared either.
Specialists differ from GPs in that if you ask them the time, they will have their eyes open when they read the broken clock on the wall.
I have no idea what good GPs serve besides flu testing. Sounds unfair but they generally seem uninformed about pretty common medical conditions.
I have no idea what good GPs serve besides flu testing. Sounds unfair but they generally seem uninformed about pretty common medical conditions.
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...
IME, it’s highly dependent on region and specialty.
I can get into local dermatologists without problem. But an endocrinologist takes a referral (because there are so few, and they’re all fully booked).
I can get into local dermatologists without problem. But an endocrinologist takes a referral (because there are so few, and they’re all fully booked).
How are you going to make it reliably stop people that lie to get into contact with medical professions?
Why does it matter if they do?
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.
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.
Why "beat"? Why not "augment" or "improve"?
Indeed.
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.
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.
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.
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.
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.
Public or private medicine shares the same issue. In fact there is no John Hopkins you can pay in the public system so things never get solved.
Yep this is something that only AI can solve. Same situation applies to education, sales, HR. Human powered bureaucracies and systems suck.
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.
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.
You can do an obscene amount of inference for a fraction of the cost of an average doctor's appointment.
The costs are so low you can easily inference a bit longer. The idea that a computer would be as lazy as a human is not even close to reality.
Not the cost of running the ai, the cost of potential tests and medical treatment if they do find something, I think?
Nah those make money not cost money (for providers).
Any AI will most certainly reflect the biases of the bureaucracies responsible for their creation.
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.
If you can do that easily, you will have no shortage of investors. But it’s not easy - getting the data alone is a huge problem.
I think OpenAI has plenty of investors...
https://x.com/deedydas/status/1933370776264323164
https://x.com/deedydas/status/1933370776264323164
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.
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…
That’s true but they have a massive shortage of clinical data. Doctor patient confidentiality is a thing.
[deleted]
[deleted]
> Yep this is something that only AI can solve.
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".
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.
LLMs already work fantastically with pretty good UX.
Does "here are the most useful things to find out next" really need that complex of a user experience?
>Yep this is something that only AI can solve.
[citation needed]
[citation needed]
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.
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.
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 only that, but you have red herrings. Going down the rabbit hole chasing random anomalies doesn’t solve the patients problem either!
what complications are there from CT scan?
asking as someone that had it
asking as someone that had it
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
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.
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.
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)
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.
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.
For IBS you get similiar treatment male or female. It's about medicine not having answers for treatment and lack of easy testing not gender roles.
It is absolutely also about genders too.
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.
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 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.
Ask women how many of their common maladies still get untreated or misdiagnosed.
White[1] males are extremely over represented in medical literature and research. And I'm saying it as a white male myself.
[1] This actually has ramifications beyond just gender. See e.g. https://www.statnews.com/2020/07/21/dermatology-faces-reckon...
White[1] males are extremely over represented in medical literature and research. And I'm saying it as a white male myself.
[1] This actually has ramifications beyond just gender. See e.g. https://www.statnews.com/2020/07/21/dermatology-faces-reckon...
> We have progressed fantastically on the common medical conditions, but once you get into more rare stuff it gets a lot harder.
At about 10% of women of reproductive age, endometriosis is way over on the “common medical conditions” side, not the “more rare stuff” side.
There's a bias here, but its not about how common the disease is, but who it affects and how.
At about 10% of women of reproductive age, endometriosis is way over on the “common medical conditions” side, not the “more rare stuff” side.
There's a bias here, but its not about how common the disease is, but who it affects and how.
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.
> There's a bias here, but its not about how common the disease is, but who it affects and how.
This worldview requires believing that doctors dgaf about their family members.
This worldview requires believing that doctors dgaf about their family members.
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.
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.
While I might be sympathetic to what you’re saying, endometriosis is not a very rare condition.
They genuinely don’t care. Don’t over think it
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.
University of Chicago Medicine has a great endo program, all of their specialists are highly rated.
Edit: https://www.uchicagomedicine.org/forefront/news/2023/august/...
Edit: https://www.uchicagomedicine.org/forefront/news/2023/august/...
Rated how? Metrics like patient satisfaction scores are not correlated with actual clinical outcomes.
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.
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.
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.
Sorry to annoy you.
Sorry to annoy you.
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.
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.
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.
> 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.
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.
People want a pill to solve the ailments they have.
People want medication to solve their problems, not actually try and solve things without paying money for it
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.
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.
https://peterattiamd.com/outlive/
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.
https://peterattiamd.com/outlive/
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.
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.
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.
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.
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 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.
> despite my Testosterone levels showing "normal" for years
> T levels back in range.
Were the T levels normal or not?
> T levels back in range.
Were the T levels normal or not?
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.
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 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.
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.)
I've ordered a supplement that includes this ingredient among other probiotics, and I'll see how it goes! Thanks for the recommendation!
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.
Let me know :)
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 :)
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.
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.
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 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!
Do you have any specific recommendations? I keep asking my docs for any new options, but it's not getting me anywhere.
https://en.m.wikipedia.org/wiki/Calcitonin_gene-related_pept...
Biologic and small molecule options
Biologic and small molecule options
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.
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'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.
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.
“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.
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.
I wonder if there are better tests today.
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.
>Opinions expressed are my own, and not those of any employer, whether past or present.
For lulz you could add "or future"
For lulz you could add "or future"
[deleted]
> The problem was incredibly evident for female patients.
Did the NYT evenly select male and female patients? Knowing about their political leanings, I highly doubt it.
Did the NYT evenly select male and female patients? Knowing about their political leanings, I highly doubt it.
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.
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.
* 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)
(that said, as a new dad, I'm also deathly afraid of SIDS so I still stuck by the American recommendations, sleep be darned)
Bed sharing isn’t just about SIDS, it’s about litterally just rolling over and smothering your child (sometimes those do get lumped in together, but increasingly they are separated if they can be).
If you are overweight, sleep on a standard western style mattress, have any sleep disorders, smoke, drink, use illegal drugs, or even some prescription medications, you are much more likely to smother your infant.
The risk of all sleep related causes of death is around 1/1000 in the US, but you can reduce that risk 100x if you follow all of the safe sleeping recommendations.
1/1000 is pretty low but it’s higher than the chance of your infant dying in a car accident, disease, or any other cause of death for full term healthy babies.
My wife (pediatric ER doctor) has had to declare numerous babies dead from a parent rolling over and suffocating their infant and usually the parents weren’t intoxicated at the time.
I have 2 kids (and a 3rd on the way). I know how hard it is to follow all the safe sleeping recommendations, but the risk is real and the cost is so high.
If you are overweight, sleep on a standard western style mattress, have any sleep disorders, smoke, drink, use illegal drugs, or even some prescription medications, you are much more likely to smother your infant.
The risk of all sleep related causes of death is around 1/1000 in the US, but you can reduce that risk 100x if you follow all of the safe sleeping recommendations.
1/1000 is pretty low but it’s higher than the chance of your infant dying in a car accident, disease, or any other cause of death for full term healthy babies.
My wife (pediatric ER doctor) has had to declare numerous babies dead from a parent rolling over and suffocating their infant and usually the parents weren’t intoxicated at the time.
I have 2 kids (and a 3rd on the way). I know how hard it is to follow all the safe sleeping recommendations, but the risk is real and the cost is so high.
Some of that fear isn’t necessarily unfounded. In America the people are larger and the beds are softer. This creates a larger, deeper divot around the adult for the baby to roll in to and suffocate.
Most of the American parents I know practiced bed-sharing including myself. But we would also answer "no" when asked about at the doctor's office because that's the "right" answer. So... I am skeptical about any negative statistics on bedsharing. We're not obese and don't drink or do drugs. That probably mitigates a huge amount of associated risk.
I've come to think the American norm is something of a self-fulfilling prophecy. Bedsharing becomes dangerous mostly when the parents fall asleep intoxicated. You might have noticed that you're much more likely to wake up with your arm partially numb if you pass out drunk than if you go to sleep sober. But because bed sharing is discouraged, it's mostly less responsible parents who do it, which creates a stronger apparent correlation with infant suffocation.
And not just alcohol. America is highly medicated. Someone who takes sleeping pills for example is unlikely to be subconsciously aware of their surroundings.
I think this might have been the case early on. Now it seems the reality is more nuanced.
Now the default discourages bedsharing, but we know and can witness personally the many positive effects. The warning causes us to be more conscientious about doing it if we choose to, and for those who default to obeisance they are in their minds making the responsible choice.
Because of the social stigma, those who do bedsharing responsibly are not being accurately reflected in the data, causing only those careless enough to admit it to be captured.
Now the default discourages bedsharing, but we know and can witness personally the many positive effects. The warning causes us to be more conscientious about doing it if we choose to, and for those who default to obeisance they are in their minds making the responsible choice.
Because of the social stigma, those who do bedsharing responsibly are not being accurately reflected in the data, causing only those careless enough to admit it to be captured.
Pretty sure Americans drink less than most Europeans.
If you ask around among other parents you’re going to find that bed sharing is a lot more common than the medical community wants it to be. We had a lot of reasons for doing it and so did many of our friends.
If I recall correctly, there was some recent research connecting the cholinergic system to SIDS, pointing at possible changes in practices to reduce the risk.
My favourites are
- 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.)
- 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.)
> 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.)
It's important to differentiate a low individual risk for you, vs what that means to a whole population.
You will easily find someone willing to say "oh I had two glasses of wine a week while pregnant and my kid was fine".
If everyone started drinking 2 glasses of wine a week in the third trimester, FAS rates will increase, and mean IQ score will dip. Will they dip by a lot? Probably not, but definitely not zero. So of course anyone in a position to make a society-wide recommendation, recommends "no alcohol".
Individual parents may look at data and say, that's a risk they're willing to take.
It's important to differentiate a low individual risk for you, vs what that means to a whole population.
You will easily find someone willing to say "oh I had two glasses of wine a week while pregnant and my kid was fine".
If everyone started drinking 2 glasses of wine a week in the third trimester, FAS rates will increase, and mean IQ score will dip. Will they dip by a lot? Probably not, but definitely not zero. So of course anyone in a position to make a society-wide recommendation, recommends "no alcohol".
Individual parents may look at data and say, that's a risk they're willing to take.
> But when I was an infant -- which is not that long ago, parents were advised otherwise.
So...research was done and people learned they were wrong?
I'm not quite following what you think the takeaway was here?
The "Back to Sleep" campaigns saw something like a 50% decrease in infant mortality within 12 months in the UK. It isn't really comparable to "fad diet of the year" medical advice.
So...research was done and people learned they were wrong?
I'm not quite following what you think the takeaway was here?
The "Back to Sleep" campaigns saw something like a 50% decrease in infant mortality within 12 months in the UK. It isn't really comparable to "fad diet of the year" medical advice.
For sleeping on their back. Our youngest daughter would not sleep on her back. She still sleeps on her tummy with arms folded under her. The only way she sleeps otherwise is in the car seat when properly exhausted. Put her to bed and she will turn around and fall asleep. So what does medicine say then?
Sleeping on the back only matters when they are very young. It’s for when they don’t have the strength to turn themselves out of a face-down / suffocating position. That’s why you practice tummy time (neck/head lifting) with an infant. Once they are older they can sleep how they like
Depends on the kid too. All 3 of my kids could lift their head up when they were born. A couple of times I forgot all babies aren't like that and picked up a friend's baby without adequate support.
It says that there is like a 10x risk of SIDS in the first four months of life with tummy sleeping.
I don't agree with her on everything, but Emily Oster's chapter on SIDS (in the second book I think, Cribsheet) I think does a good job outlining the data on it. And my brother just had a kid who also would absolutely not sleep on his back. Once he could roll he just sleeps on his tummy (but once they can roll SIDS is not really an issue)
I don't agree with her on everything, but Emily Oster's chapter on SIDS (in the second book I think, Cribsheet) I think does a good job outlining the data on it. And my brother just had a kid who also would absolutely not sleep on his back. Once he could roll he just sleeps on his tummy (but once they can roll SIDS is not really an issue)
What I was taught is that one should not put them down on their tummy, but if they're able to flip themselves over when put on their back they're no longer so likely to die from it.
> But when I was an infant -- which is not that long ago, parents were advised otherwise
Medicine is wild. Lots of things that were taken as gospel even 15 years ago have been completely flipped on their head. The NHS massively changed their advice last year on asthma treatment and it’s basically the opposite of what they said before. We’ve seen the same with musculoskeletal injuries, nerve injuries and just general recovery.
Medicine is wild. Lots of things that were taken as gospel even 15 years ago have been completely flipped on their head. The NHS massively changed their advice last year on asthma treatment and it’s basically the opposite of what they said before. We’ve seen the same with musculoskeletal injuries, nerve injuries and just general recovery.
Sorry, but what was the change? Adding corticoid inhalers when treating an asthma episode? Curious since I have asthma and didn’t hear about this change yet.
The short of it was that they decided salbutamol was overprescribed and shouldn’t be given to anyone who isn’t taking a corticosteroid inhaler at the same time. The advice has changed from “if you feel like you need your blue inhaler take it” to “your asthma should be managed by your corticosteroid dose, and if it’s not you should adjust”. Obviously not suitable for everyone but for people like my dad it got him from using his reliever once a week to not having an active prescription for it anymore.
That was a worldwide change after they figured out long acting beta agonists were basically killing people because they don’t treat the underlying inflammation like inhaled corticosteroids do.
Yeah that doesn’t surprise me - I just don’t have enough knowledge of outside the UK to know if it was advised elsewhere. Anecdotally, my breathing is so much better since I’ve adjusted to the correct dose and never missing one, I’ve gone from needing a reliever with me at all times to not using it once in a year.
Shit I should talk to my doctor again. Although probably for exercises induced things might be a little different.
Very possibly, although I wouldn’t be surprised if the advice has changed. Asthma is an inflammation of the lungs and the learnings seem to be that any inflammation is bad, so we want to prevent inflammation rather than respond to it.
Definitely worth a conversation!
Definitely worth a conversation!
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?
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?
Vaccination recommendations for COVID and flu are another one.
US: essentially everyone
Most of Europe: only recommended for age 65+ or otherwise at risk
US: essentially everyone
Most of Europe: only recommended for age 65+ or otherwise at risk
…in the nordics you should have them sleep outside…
It's true. Though it's not about leaving them outside for the night with only a dull knife with which to fight off the wolves. It's about leaving them in their prams outside for nap time. Obviously bundled up to keep warm during winter.
We're not really concerned about baby kidnappings here, so it's not uncommon to see prams with sleeping babies outside of cafes while the mom or dad is inside having some coffee.
We're not really concerned about baby kidnappings here, so it's not uncommon to see prams with sleeping babies outside of cafes while the mom or dad is inside having some coffee.
Not a joke. When my daughter was younger and we were visiting the daycare (förskola) facilities around us to pick one, in one of them they didn't have a room for children to sleep indoors, they always slept outdoors (even in the winter). This daycare was very highly recommended.
Anecdotally, when my daughter was a baby and had issues falling asleep, all it took was to take her for a walk outside in negative (celsius) temperatures and it was like we gave her sleeping pills. It never failed.
I grew up in a different country, so this whole concept was alien to me and it was diametrically opposite to my instincts, but I have to say that I'm a believer now.
Anecdotally, when my daughter was a baby and had issues falling asleep, all it took was to take her for a walk outside in negative (celsius) temperatures and it was like we gave her sleeping pills. It never failed.
I grew up in a different country, so this whole concept was alien to me and it was diametrically opposite to my instincts, but I have to say that I'm a believer now.
They're fremen: https://www.bbc.com/news/magazine-21537988
Here in Poland my mum used to make me sleep outside (on the balcony) when it was as low as -20°C outside. (Covered in lots of layers.) It’s definitely not just Nordics.
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/
Full background: https://www.reddit.com/r/Ureaplasma/comments/qavqf1/the_urea...
Full background: https://www.reddit.com/r/Ureaplasma/comments/qavqf1/the_urea...
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?
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.
https://www.mskcc.org/news/burning-issue-truth-about-hot-dri...
https://www.mskcc.org/news/burning-issue-truth-about-hot-dri...
Heard this in France too from MD. Link between drinking too hot (over 60°C) and oesophagus cancer
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
In european/North American countries where people normally drink out of ceramic mugs, people generally end up drinking hot drinks at a lower temperature
Huh? How does the straw matter and what is the mechanism of action here? Citation needed.
It's oesophageal cancer specifically, and I think drinking through a metal straw instead of sipping causes higher temperature liquid to be in contact with the throat.
Haven't actually read through the wiki references, but seems like it's an 'association' rather than anything definitive
https://en.wikipedia.org/wiki/Yerba_mate#Cancer
Haven't actually read through the wiki references, but seems like it's an 'association' rather than anything definitive
https://en.wikipedia.org/wiki/Yerba_mate#Cancer
The "hot drinks cause cancer" thing is surprisingly legit
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.
> In the US giving any form of peanuts to babies is attempted murder, in Israel peanut puffs (Bamba) are among the first foods offered.
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.
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.
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
> 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
Makes you realize how much of what we think is "settled science" is often just what gets repeated in a given language or culture
Do you mind sharing a promising article in Japanese which can be translated?
I just took the first link from a Google search that looked not to be advertisement (edit: but still kinda is)
https://emishia-clinic.jp/low-dose-pill/on-my-period-sex/
https://emishia-clinic.jp/low-dose-pill/on-my-period-sex/
This makes me wonder how to search for content in another language? I mean most sites are almost trivially translatable by now.
You can easily autotranslate your question into whatever language you'd like to search, go to a search engine for that language, and see what you get.
If I want to do a search for Chinese content, I go to baidu, enter a query that makes sense to me, and look for a suggested query that looks right.
Doing this is much less useful than you might think. You'll still lack the ability to interpret the search results, or the pages you click through to. It's not an issue of translating the content. You have no idea what kind of pages you've turned up, what the ones you want should look like, or how information is laid out in the foreign websites. Your habits from the English-speaking internet won't apply.
If I want to do a search for Chinese content, I go to baidu, enter a query that makes sense to me, and look for a suggested query that looks right.
Doing this is much less useful than you might think. You'll still lack the ability to interpret the search results, or the pages you click through to. It's not an issue of translating the content. You have no idea what kind of pages you've turned up, what the ones you want should look like, or how information is laid out in the foreign websites. Your habits from the English-speaking internet won't apply.
You just search in the language you're looking for?
(And if you have a country filter/hint set on your search engine of choice, you disable or change it appropriately.)
(And if you have a country filter/hint set on your search engine of choice, you disable or change it appropriately.)
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.
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.
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!
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!
>and continues to erect barriers to encourage them not too
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.
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.
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.
Also, we're now finding males have a hormonal cycle, but it's less obvious or predictable than females' so those variables have probably been in there all along, just unknown.
Completely different argument.
It was an example of research on women’s health being underfunded or underresearched.
No, it was a non-sequitur argument after having your core premise disproven with an extremely common and well-known example of women's health being extremely well-funded. You even carved out special pleading by trying to exempt it.
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.
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.
Any surgeon will tell you the best patient is the one you don’t have to talk to, so don’t think your experience is an outlier.
Your water slide to the parking lot is an apt description—-I can 100% believe people wanting such a thing.
Your water slide to the parking lot is an apt description—-I can 100% believe people wanting such a thing.
Sounds like you need to start going to a different hospital.
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.
Considering the magic of birth and the war in the womb[0] it's amazing that the reproductive system works as well as it does.
Pregnancy relieves the symptoms but is not a cure. But surely you'd have to consider lower fertility has something to do with the increase in endometriosis.
[0] https://aeon.co/essays/why-pregnancy-is-a-biological-war-bet...
Pregnancy relieves the symptoms but is not a cure. But surely you'd have to consider lower fertility has something to do with the increase in endometriosis.
[0] https://aeon.co/essays/why-pregnancy-is-a-biological-war-bet...
> Considering the war in the womb it's amazing that the reproductive system works as well as it does.
...or maybe it's because of that war it works as well as it does? Maybe it takes agents in opposition to evolve enough redundancies and contingency plans to get things working?
Before Mendel, at least some people hypothesised there must be some sort of "battle of the germ cell" that powered evolution, because unimportant functions -- even when they aren't actively detrimental -- tend to be forced nearly out of existence.[1] Even our bodies, miracles of cooperation, evolve to some degree under antagonism.
Thanks for referencing that article, though. I was going to but now I don't have to. Everyone should read it. Utterly fascinating.
[1]: The example that comes to mind are the femurs of whales. They are absolutely tiny. Much smaller than can reasonably explained by them being a problem for the whale itself.
...or maybe it's because of that war it works as well as it does? Maybe it takes agents in opposition to evolve enough redundancies and contingency plans to get things working?
Before Mendel, at least some people hypothesised there must be some sort of "battle of the germ cell" that powered evolution, because unimportant functions -- even when they aren't actively detrimental -- tend to be forced nearly out of existence.[1] Even our bodies, miracles of cooperation, evolve to some degree under antagonism.
Thanks for referencing that article, though. I was going to but now I don't have to. Everyone should read it. Utterly fascinating.
[1]: The example that comes to mind are the femurs of whales. They are absolutely tiny. Much smaller than can reasonably explained by them being a problem for the whale itself.
Not sure if the article mentioned it (writing style was getting on my nerves about half way through), but endometriosis is also highly hereditary. My wife’s mother has 2 sisters. One sister had endometriosis and the other two had daughters (including my wife) who had it.
It has also been known to degrade egg quality, resulting in total infertility in some (including my wife and her aunt—jury is still out on the cousin).
I don’t think most reproductive surgeons think of endometriosis as untreatable. 1% rate of having some kind of complication from the surgery doesn’t sound crazy high to me. The recurrence rate I think depends pretty heavily on how pervasive the case was and how soon it was caught.
My wife was in her late 20s when she had surgery to have it cut out via laparoscopy, and it wasn’t really a big deal. She had a hysterectomy this year for other reasons, over 15 years later and had no signs of recurrence.
It has also been known to degrade egg quality, resulting in total infertility in some (including my wife and her aunt—jury is still out on the cousin).
I don’t think most reproductive surgeons think of endometriosis as untreatable. 1% rate of having some kind of complication from the surgery doesn’t sound crazy high to me. The recurrence rate I think depends pretty heavily on how pervasive the case was and how soon it was caught.
My wife was in her late 20s when she had surgery to have it cut out via laparoscopy, and it wasn’t really a big deal. She had a hysterectomy this year for other reasons, over 15 years later and had no signs of recurrence.
The article mentions it. If you bailed before that point, you bailed just before it got really good.
>what actually is the clinical definition of endometriosis? Plainly put, it is when tissue that resembles the uterine lining, or endometrial-like tissue, grows outside the uterus. The tissue can implant itself in nearby tissues, like the ovaries and fallopian tubes, or even more distal organs like the bladder and bowel. ... Over time, these repeated cycles of inflammation and fibrosis may lead to permanent structural changes within the abdomen and pelvis, contributing to chronic pelvic pain and infertility.
i feel like something has been left out. why would uterine lining cells outside the uterus lead to infertility inside the uterus? from this description, I can see all sorts of things going haywire, but it was my impression that the uterine lining was scarred and otherwise rendered infertile for implantation.
i feel like something has been left out. why would uterine lining cells outside the uterus lead to infertility inside the uterus? from this description, I can see all sorts of things going haywire, but it was my impression that the uterine lining was scarred and otherwise rendered infertile for implantation.
> why would uterine lining cells outside the uterus lead to infertility inside the uterus?
The quoted text mentions for example the ovaries themselves, which if damaged can not release eggs, and the fallopian tubes, which if damaged can not transmit eggs from the ovaries to the uterus. These are outside the uterus.
The quoted text mentions for example the ovaries themselves, which if damaged can not release eggs, and the fallopian tubes, which if damaged can not transmit eggs from the ovaries to the uterus. These are outside the uterus.
According to my wife’s surgeon (she had endometriosis removed in 2008) there is some belief that the condition can actually cause the womb to become less hospitable to egg development, i.e. the fluids en utero actually weaken the health of the eggs.
The uterus is not the only thing involved in infertility. More generally, endometriosis probably affects fertility in multiple different ways, and a woman with endometriosis and fertility issues may never know what her specific problem is.
On the plus side, IVF works pretty well for many women with endometriosis. IVF patients with endo have only somewhat worse stats than other IVF patients.
On the plus side, IVF works pretty well for many women with endometriosis. IVF patients with endo have only somewhat worse stats than other IVF patients.
It's less about scarring inside the uterus, and more about chaos in the neighborhood
You don't understand why uterine cells screwing up the fallopian tubes or ovaries would cause infertility?
I heard about this disease through an education channel.
https://www.youtube.com/watch?v=KzA9VATcZhY
> The speaker had been experiencing symptoms like period pain, bloating, and fatigue for years, visiting many doctors without getting a proper diagnosis. When severe pain developed, a GP ordered an ultrasound but the speaker initially ignored the results, assuming it was just an ovarian cyst. However, after using the Ada AI medical diagnosis app, which asked questions about symptoms and calculated probabilities of various conditions, it suggested endometriosis - a condition the speaker had never heard of. This prompted them to return to their doctor, where the ultrasound results confirmed the AI's diagnosis of endometriosis.
https://www.youtube.com/watch?v=KzA9VATcZhY
> The speaker had been experiencing symptoms like period pain, bloating, and fatigue for years, visiting many doctors without getting a proper diagnosis. When severe pain developed, a GP ordered an ultrasound but the speaker initially ignored the results, assuming it was just an ovarian cyst. However, after using the Ada AI medical diagnosis app, which asked questions about symptoms and calculated probabilities of various conditions, it suggested endometriosis - a condition the speaker had never heard of. This prompted them to return to their doctor, where the ultrasound results confirmed the AI's diagnosis of endometriosis.
In the hope that someone finds it useful: I have no idea how likely it is to replicate, but there's a publication linking Fusobacterium infiltration of endometrial tissue with the development of endometriosis: https://www.science.org/doi/10.1126/scitranslmed.add1531
The comparison to cancer is honestly kind of chilling. The fact that endometriosis lesions pick up the same mutations, adapt to evade the immune system, and yet are considered "benign" is such a medical blind spot
There are probably other pluripotent cell types that do the exact same thing, but just don't get detected since very few cell types slough off with a hormonal cycle.
There are probably many more instances of this disease in men that never get triggered and discovered due to atypical hormonal levels being required.
Our bodies are weird systems.
There are probably many more instances of this disease in men that never get triggered and discovered due to atypical hormonal levels being required.
Our bodies are weird systems.
In what way is endometriosis related to a) hormonal birth control (estrogen and progestin), b) sexually transmitted disease, c) age, d) pregnancy, e) obesity? The article didn't seem to discuss these much, I don't know much about endometriosis, but I feel like I have heard these come up and was surprised not to see them discussed.
Because it's genetic. It's something that develops during sexual maturation, it doesn't just pop up. My SO is the third generation in her family that has Endo. Women will have flare ups where they will be in excruciating pain during one menstruation cycle, and the next might be a non-endo's idea of a bad cramp, so it's often misdiagnosed as severe constipation, appendicitis (even though the pain is almost always on the right side), or they're given the "it's just in your head" treatment.
For the past few years I have had difficulty working out in the yard, and then in 2018 it got harder and harder to breathe. After many tests, it was a CT scan that showed Emphysema, and scarring in my lungs. I quit smoking 8 years ago, but the damage has been done. I got to a point I couldn’t catch my breath and was coughing so hard I thought the top of my head would blow off; nothing was really working to help my condition. Finally, I started on the COPD formula, and with the help of this treatment, I’m active again. Its effects on emphysema are amazing; all my symptoms gradually faded away. I breathe much more freely now and no longer need my oxygen cylinder! Visit Uinehealthcentre. net to get this formula. I'm surprised a lot of people with COPD/emphysema haven't heard of the formula.
So, why don't cancer treatments work here? Or would they likely work here but they largely haven't been tried yet? (See also codetweep's comment about surgery.)
Endometriosisis is 'benign' in the self-contained sense only. I would imagine that changes the target profile. I don't think there is are any rigid 'out of scope' policing drugs or biological mechanisms for that. As opposed to cancerous malformed biomarkers which scream "I shouldn't exist!" to the immune system.
I doubt chemotherapy drugs have a favorable risk/benefit ratio. The original article notes that somatic DNA changes might be involved, so perhaps immunotherapy might be useful. Interestingly this is being studied [1].
1. https://pmc.ncbi.nlm.nih.gov/articles/PMC10150018/
1. https://pmc.ncbi.nlm.nih.gov/articles/PMC10150018/
[deleted]
Just wait til you find out men can get it (extremely rare)
This is in the article!
Is that with or without hormone treatment?
There is a strong correlation with hormones. It’s in the post.
Thanks I wanted to see the commenters perspective and if they have different information or opinions.
Seriously?
It must be in combination with one or more of the intersex conditions, yes?
I just wrote up thread about a recurring chat between my wife and I all about what if Men got this disease... the law would change quickly!
It must be in combination with one or more of the intersex conditions, yes?
I just wrote up thread about a recurring chat between my wife and I all about what if Men got this disease... the law would change quickly!
“endometriosis is also found in men with a total of 16 cases previously reported in the literature”
I don’t think this is enough to affect funding.
I don’t think this is enough to affect funding.
Nope. Read the article! It's good.
https://pmc.ncbi.nlm.nih.gov/articles/PMC5833878/
https://pmc.ncbi.nlm.nih.gov/articles/PMC5833878/
I will! TY!
(Not sure why I got zeroed above... was genuine curiosity, honest!)
(Not sure why I got zeroed above... was genuine curiosity, honest!)
[deleted]
I have no doubt women’s issues are often poorly diagnosed/treated —- men’s health is also treated poorly and we don’t even have a dedicated medical specialty.
(I don’t consider low-T clinics as “healthcare”)
(I don’t consider low-T clinics as “healthcare”)
men’s health clinics aka read a porsche magazine in the lobby and give us 500 bucks
> what if Men got this disease... the law would change quickly!
Honestly I've always thought this line of argumentation is dumb. Pregnancy is complicated, we don't understand it, and there are obvious ethical problems studying pregnant women.
There are many syndromes that affect men and women we similarly know little about.
The body is complicated. We shouldn't attribute to malice what is best explained by lack of knowledge
Honestly I've always thought this line of argumentation is dumb. Pregnancy is complicated, we don't understand it, and there are obvious ethical problems studying pregnant women.
There are many syndromes that affect men and women we similarly know little about.
The body is complicated. We shouldn't attribute to malice what is best explained by lack of knowledge
I don't think it's beneficial to just put both in the same pot. It's just a similar condition in similar tissue afaiu. Men don't have a uterus.
Endometriosis is the presence of endometrial like tissue outside the uterus. Male cells retain the ability to transform into endometrial cells given the right stimulus. In rare pathological cases, this happens.
[flagged]
I know your intention was simply to raise the issue of gender biases in medical research resource allocation, but it set off a gender flamewar, and that's just the kind of thing we're trying to avoid on HN. It's important to think about the consequences of the comments we post, and it was predictable that this kind of thing would happen.
For what it's worth, I saw the comment earlier and thought "not great but don't want to silence a valid point about gender biases in something as important as medical research", but looking now at the flamewar that's resulted, I'm afraid we just have to uphold the guidelines.
Another thought that came to mind when I saw your comment:
Over the years I've had my own experiences with illnesses that cause great pain, distress and limitations on life options, and during those times I often had thoughts along the lines of "people in my category with illnesses like this just aren't considered important enough to attract research funding and care for our plight".
Having continued to look into the topic very deeply, another explanation arises: conditions like this (complex disorders involving autoimmunity – even of the relatively mild kind that I had) are just very difficult to research, because as soon as you start studying a cohort of patients, it turns out to be very difficult to find consistent factors that explain the condition.
My understanding is that endometriosis (and I have learned a little about it from seeing loved ones being diagnosed with it or evaluated for it) is that it's of the same kind; it seems to be at least partially an autoimmune disease (or frequently co-morbid with autoimmune diseases) and, as the article states, it has been found to be extremely difficult to explain, let alone treat. We see similar obstacles with other autoimmune illness like ALS and MS, both of which have had huge amounts of funding over the years but still elude researchers' attempts to even explain them, let alone cure them.
It just seems that some illnesses are extremely hard to explain and cure, even with vast amounts of money invested in them, and that's particularly the case with anything involving autoimmunity.
For what it's worth, I saw the comment earlier and thought "not great but don't want to silence a valid point about gender biases in something as important as medical research", but looking now at the flamewar that's resulted, I'm afraid we just have to uphold the guidelines.
Another thought that came to mind when I saw your comment:
Over the years I've had my own experiences with illnesses that cause great pain, distress and limitations on life options, and during those times I often had thoughts along the lines of "people in my category with illnesses like this just aren't considered important enough to attract research funding and care for our plight".
Having continued to look into the topic very deeply, another explanation arises: conditions like this (complex disorders involving autoimmunity – even of the relatively mild kind that I had) are just very difficult to research, because as soon as you start studying a cohort of patients, it turns out to be very difficult to find consistent factors that explain the condition.
My understanding is that endometriosis (and I have learned a little about it from seeing loved ones being diagnosed with it or evaluated for it) is that it's of the same kind; it seems to be at least partially an autoimmune disease (or frequently co-morbid with autoimmune diseases) and, as the article states, it has been found to be extremely difficult to explain, let alone treat. We see similar obstacles with other autoimmune illness like ALS and MS, both of which have had huge amounts of funding over the years but still elude researchers' attempts to even explain them, let alone cure them.
It just seems that some illnesses are extremely hard to explain and cure, even with vast amounts of money invested in them, and that's particularly the case with anything involving autoimmunity.
[deleted]
( removed because I am not in a place to do it right, sorry all)
>> My Wife has often said, "If Men were susceptible to a similar, or the same disease, it would see far more research and or funding.
I wish we would stop turning everything into a competition. As a man with a similar 'tricky' condition I can confirm the medical profession is generally shit with anything tricky regardless of your sex. I have experienced the exact same fight for treatment and investigation that I often read of women experiencing.
I wish we would stop turning everything into a competition. As a man with a similar 'tricky' condition I can confirm the medical profession is generally shit with anything tricky regardless of your sex. I have experienced the exact same fight for treatment and investigation that I often read of women experiencing.
Like we put money in fixing homelessness, which affects mostly men right? Like we put money in suicide prevention which affects mostly men in every single country in the world? Feminism portrays a heavily distorted view of the world, such movement helped fix fundamental problems like women's voting rights, but it has a tendency for overcorrection and overestimating the number of problems caused by "the patriarchy" that are actually caused by "humans are shitty sometimes about some major issues"
Don't worry, we are susceptible to many pain conditions. Some of which are worse, and some of which women can get, too.
And of these more painful conditions the research is... Just as lacking. I do get the desperation for... Something. Anything.
Actually Covid saw the biggest research boost - my own is seen as a good control for long covid. A number of autoimmune conditions got similar increased interest. Right up until a political group decided covid research was a nice target.
(I've been in pain for 2/3rds of my life. Pain generally described as exceeding childbirth. There is never a lull. There is no treatment that works.)
And of these more painful conditions the research is... Just as lacking. I do get the desperation for... Something. Anything.
Actually Covid saw the biggest research boost - my own is seen as a good control for long covid. A number of autoimmune conditions got similar increased interest. Right up until a political group decided covid research was a nice target.
(I've been in pain for 2/3rds of my life. Pain generally described as exceeding childbirth. There is never a lull. There is no treatment that works.)
I don't know how childbirth compares to the pain that I experienced during an incredibly pronounced bout of tonsilitis I had ~4 months ago, but if it's even 80% as painful, I don't know how one could live with that level of pain non-stop.
When I had tonsillitis, the pain was so intense and so persistent until the 3rd day of antibiotics, I was tempted to just throw myself off a bridge to make it stop. Had I been under the impression there was no way to make it stop in a few days, I suspect I would have.
When I had tonsillitis, the pain was so intense and so persistent until the 3rd day of antibiotics, I was tempted to just throw myself off a bridge to make it stop. Had I been under the impression there was no way to make it stop in a few days, I suspect I would have.
Worth mentioning in these threads is that pain is a very personal experience. No two people experience pain the same way. We must have respect for each others' experiences of pain, because we don't know what it is like for them.
It's senseless to compare experiences of pain between people. Unless it's like "a pinprick" vs. "crushed by a motorcycle" or other obviously extreme contrasts.
It's senseless to compare experiences of pain between people. Unless it's like "a pinprick" vs. "crushed by a motorcycle" or other obviously extreme contrasts.
>> When I had tonsillitis, the pain was so intense and so persistent until the 3rd day of antibiotics, I was tempted to just throw myself off a bridge to make it stop. Had I been under the impression there was no way to make it stop in a few days, I suspect I would have.
Easy to say, harder to do. The will to live is probably stronger than you realise. I experienced a short 2 week painful illness and felt similar to you. I later experienced the same thing for 2 years. You adapt and learn to cope.
Easy to say, harder to do. The will to live is probably stronger than you realise. I experienced a short 2 week painful illness and felt similar to you. I later experienced the same thing for 2 years. You adapt and learn to cope.
About 30% of people who end up with my particular illness, do kill themselves in the first five years. Not that severity of pain makes sense person-to-person. Pain is personal. The worst pain is the worst pain you've ever felt, and it's never surprising if you do something about that. (Your worst pain... Was yours. Is yours. Don't try and compare it. No one else entirely gets what yours was like.)
However, if you do survive the first five years... You become unlikely to suicide out of it. You've learnt to live in it.
I think the stats on that are fairly similar to endo, from what little research that there is. If you can make it past the first few years of everyone ignoring you and calling you weak, and telling you to suck it up, you are now better prepared to deal with the daily mental siege.
(Though you are under siege. And sometimes those walls do collapse, and you're broken again. You can't necessarily take on more, just become you're stronger - you're stronger but you're spending all the extra effort just to stay alive.)
But to end on a completely different note, that can make a few people stare: I'm in pain in my dreams, too. I don't remember what it's like without.
However, if you do survive the first five years... You become unlikely to suicide out of it. You've learnt to live in it.
I think the stats on that are fairly similar to endo, from what little research that there is. If you can make it past the first few years of everyone ignoring you and calling you weak, and telling you to suck it up, you are now better prepared to deal with the daily mental siege.
(Though you are under siege. And sometimes those walls do collapse, and you're broken again. You can't necessarily take on more, just become you're stronger - you're stronger but you're spending all the extra effort just to stay alive.)
But to end on a completely different note, that can make a few people stare: I'm in pain in my dreams, too. I don't remember what it's like without.
On other areas it's the other way around, breast cancer gets a lot of attention while prostate cancer gets less.
Honestly it's probably just because the condition responds well to hormonal therapy. If you've got a cheap and effective treatment available for a condition it's hard to justify spending research dollars on digging deeper into it (particularly something as strange as Endometriosis, eg. where do you even start looking).
The strong genetic component also makes it somewhat unlikely that it's something we'll be able to ever eliminate completely but perhaps there will one day be targeted drugs that can stop disease progression. It's good to see more research dollars being made available in recent years.
There's a lot of other conditions that receive a similar lack of attention, for a common male analogue "chronic pelvic pain syndrome".
The strong genetic component also makes it somewhat unlikely that it's something we'll be able to ever eliminate completely but perhaps there will one day be targeted drugs that can stop disease progression. It's good to see more research dollars being made available in recent years.
There's a lot of other conditions that receive a similar lack of attention, for a common male analogue "chronic pelvic pain syndrome".
It doesn’t respond that well. But most patients are told that the next option is invasive surgery and that there are no other choices.
s1ncere(6)
dyauspitr(5)
Wow this article came at such a coincidental time!
tl:dr One of my best friends has Endo and through lifestyle changes was able to "cure herself".
It's in quotes because, like asthma, you don't really get rid of it, but it's gotten to the point where her Endometriomas have shrunken to a sixth of their size (verified by an ultrasound), some have even completely disappeared, she feels no pain and can live "normal" life.
For those who may be interested in more details:
She was diagnosed with Endo about 5 years ago. Had to go through 3 doctors until she finally found one who diagnosed her with it.
The only options given to her: 1. Surgery to remove the endometriomas. 2. Pain killers. 3. Weed.
2 and 3 aren't real solutions, and from doom-scrolling through Facebook / reddit it's evident that at best, 1 only offers temporary relief. So she declined and opted to try and find a different solution.
Since Western medicine failed her, she looked into Eastern medicine. Then she started doing Yoga, took a year-long Nutrition course that also incorporated Eastern approaches. Stopped eating processed foods, started journaling, removing stress from her life as best she could.
After sticking to this, and a bunch of trial and error, she's gotten to the point I mentioned above.
Now she has her own online program where she teaches other women the science and methodology she used to manage her symptoms.
And some of the success stories are insane. Women who have lived with bloating and pain for years are suddenly seeing improvements in a matter of weeks.
Currently the course is in Hebrew but I'm helping to translate it to English.
If anyone here knows someone who has Endo and is interested in getting access to the program during its beta-English phase, let me know :)
[email protected]
tl:dr One of my best friends has Endo and through lifestyle changes was able to "cure herself".
It's in quotes because, like asthma, you don't really get rid of it, but it's gotten to the point where her Endometriomas have shrunken to a sixth of their size (verified by an ultrasound), some have even completely disappeared, she feels no pain and can live "normal" life.
For those who may be interested in more details:
She was diagnosed with Endo about 5 years ago. Had to go through 3 doctors until she finally found one who diagnosed her with it.
The only options given to her: 1. Surgery to remove the endometriomas. 2. Pain killers. 3. Weed.
2 and 3 aren't real solutions, and from doom-scrolling through Facebook / reddit it's evident that at best, 1 only offers temporary relief. So she declined and opted to try and find a different solution.
Since Western medicine failed her, she looked into Eastern medicine. Then she started doing Yoga, took a year-long Nutrition course that also incorporated Eastern approaches. Stopped eating processed foods, started journaling, removing stress from her life as best she could.
After sticking to this, and a bunch of trial and error, she's gotten to the point I mentioned above.
Now she has her own online program where she teaches other women the science and methodology she used to manage her symptoms.
And some of the success stories are insane. Women who have lived with bloating and pain for years are suddenly seeing improvements in a matter of weeks.
Currently the course is in Hebrew but I'm helping to translate it to English.
If anyone here knows someone who has Endo and is interested in getting access to the program during its beta-English phase, let me know :)
[email protected]
Many doctors just prescribe birth control pills as treatment for endometriosis and call it a day.
So much for it being an interesting disease.
So much for it being an interesting disease.
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.