I'm always struck by stories of how difficult it is to get a condition diagnosed. Endometriosis is a great example as the OP author notes.
The New York Times used to run a series of medical case studies in their magazine, and over and over again the story was essentially that the patient sought care from primary care and specialists, without success, and were generally miserable, until a miraculous event happened, like a friend's aunt knowing someone at Johns Hopkins, and that doctor having the time to think about it. The problem was incredibly evident for female patients.
I don't know whether this is a result of doctors being burned out by the system that they work in, a certain doctorial arrogance that diminishes their listening skills, over-reliance on heuristic diagnoses, some kind of ignorance of womens' conditions, or even a kind of medical misogyny. But it pushes people pretty quickly towards Dr Google and sometimes, sadly, into quackery, and that can't be a good thing.
giantg2 · 11h ago
"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.
NBJack · 4h ago
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.
paulryanrogers · 5h ago
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.
chongli · 1h ago
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).
kulahan · 1h ago
We need more of all healthcare professionals. Nurses and CNAs are getting run ragged just the same.
BobbyTables2 · 4h ago
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.
nradov · 2h ago
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).
kulahan · 1h ago
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.
renewiltord · 11h ago
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.
toomuchtodo · 8h ago
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)
wizzwizz4 · 7h ago
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).
Aw, it's next-token prediction. This is not generally useful, only a "last resort" research tool.
giantg2 · 10h ago
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.
renewiltord · 9h ago
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.
antasvara · 4h ago
>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.
BobbyTables2 · 4h ago
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.
edmundsauto · 8h ago
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...
alistairSH · 7h ago
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).
cess11 · 10h ago
How are you going to make it reliably stop people that lie to get into contact with medical professions?
rincebrain · 9h ago
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.
baxtr · 8h ago
Why "beat"? Why not "augment" or "improve"?
ipaddr · 6h ago
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.
KaoruAoiShiho · 11h ago
Yep this is something that only AI can solve. Same situation applies to education, sales, HR. Human powered bureaucracies and systems suck.
majormajor · 10h ago
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.
KaoruAoiShiho · 10h ago
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.
nemomarx · 10h ago
Not the cost of running the ai, the cost of potential tests and medical treatment if they do find something, I think?
KaoruAoiShiho · 8h ago
Nah those make money not cost money (for providers).
sfn42 · 9h ago
You can do an obscene amount of inference for a fraction of the cost of an average doctor's appointment.
dayofthedaleks · 11h ago
Any AI will most certainly reflect the biases of the bureaucracies responsible for their creation.
KaoruAoiShiho · 10h ago
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.
hluska · 10h ago
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.
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.
KaoruAoiShiho · 7h ago
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.
tbrownaw · 10h ago
> 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".
KaoruAoiShiho · 10h ago
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.
tbrownaw · 6h ago
Does "here are the most useful things to find out next" really need that complex of a user experience?
snitty · 10h ago
>Yep this is something that only AI can solve.
[citation needed]
Spooky23 · 13h ago
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.
margalabargala · 12h ago
> 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.
Spooky23 · 12h ago
Not only that, but you have red herrings. Going down the rabbit hole chasing random anomalies doesn’t solve the patients problem either!
NooneAtAll3 · 7h ago
what complications are there from CT scan?
asking as someone that had it
macNchz · 5h ago
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
placardloop · 14h ago
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.
epistasis · 12h ago
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.
dragonwriter · 8h ago
> 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.
epistasis · 7h ago
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.
tbrownaw · 7h ago
> 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.
ipaddr · 6h ago
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.
tbrownaw · 6h ago
"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.
dinkumthinkum · 10h ago
While I might be sympathetic to what you’re saying, endometriosis is not a very rare condition.
troupo · 8h ago
> 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)
ipaddr · 6h ago
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.
genocidicbunny · 2h ago
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.
troupo · 6h ago
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.
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.
asdf6969 · 10h ago
They genuinely don’t care. Don’t over think it
drewg123 · 9h ago
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.
toomuchtodo · 3h ago
University of Chicago Medicine has a great endo program, all of their specialists are highly rated.
Rated how? Metrics like patient satisfaction scores are not correlated with actual clinical outcomes.
Henchman21 · 13h ago
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.
margalabargala · 12h ago
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.
Henchman21 · 12h ago
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.
majormajor · 10h ago
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.
margalabargala · 11h ago
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.
BobaFloutist · 11h ago
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.
tbrownaw · 7h ago
> 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.
frereubu · 10h ago
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.
renewiltord · 11h ago
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.
margalabargala · 11h ago
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?
liquidise · 12h ago
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.
kjkjadksj · 10h ago
Exactly why weight loss pills are a multibillion dollar industry today.
nradov · 2h ago
Technically those are mostly weight loss injections now. The pills don't work nearly as well.
nradov · 2h ago
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.
People want medication to solve their problems, not actually try and solve things without paying money for it
bane · 3h ago
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.
GrantMoyer · 12h ago
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.
swat535 · 6h ago
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.
CjHuber · 5h ago
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.
throaway2501 · 2h ago
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?
dzink · 5h ago
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.
matsemann · 10h ago
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.
smeej · 12h ago
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.
itronitron · 11h ago
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.)
BobaFloutist · 11h ago
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?
spondylosaurus · 4h ago
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.
dapper_bison17 · 11h ago
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 :)
wbl · 11h ago
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!
Asooka · 7h ago
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.
ozim · 12h ago
"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.
BrandoElFollito · 7h ago
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.
scythe · 14h ago
Popular understanding, particularly in the United States, is a little behind the scientific opinion on the subject. Most women I've talked to are still under the impression that endometriosis can only be diagnosed by laparoscopy. But there have been improvements in the use of contrast MRI for diagnosis, and as of 2022 the guidelines in Europe recommend MRI as the first option.
However, the protocol isn't perfect, and there is probably still room to develop better contrast agents and MR sequences.
>some kind of ignorance of womens' conditions
Some things are just hard. The treatments for benign prostatic hyperplasia suck too. There is no effective reversible pharmaceutical male birth control. Et cetera.
refurb · 9h ago
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.
gosub100 · 8h ago
> 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.
VagabundoP · 5h ago
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.
acyou · 21m ago
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.
jwrallie · 19h ago
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.
317070 · 19h ago
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.
porphyra · 16h ago
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)
sarchertech · 9h ago
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.
rescripting · 15h ago
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.
Enginerrrd · 12h ago
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.
throwaway173738 · 13h ago
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.
treyd · 14h ago
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.
scythe · 15h ago
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.
svnt · 10h ago
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.
randerson · 14h ago
And not just alcohol. America is highly medicated. Someone who takes sleeping pills for example is unlikely to be subconsciously aware of their surroundings.
BobaFloutist · 9h ago
Pretty sure Americans drink less than most Europeans.
kqr · 18h ago
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.)
margalabargala · 12h ago
> 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.
freddie_mercury · 15h ago
> 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.
spockz · 16h ago
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?
vosper · 16h ago
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
Enginerrrd · 12h ago
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.
LeonardoTolstoy · 16h ago
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)
kqr · 14h ago
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.
maccard · 18h ago
> 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.
whatevermom · 17h ago
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.
maccard · 15h ago
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.
jmole · 13h ago
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.
maccard · 11h ago
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.
wbl · 11h ago
Shit I should talk to my doctor again. Although probably for exercises induced things might be a little different.
maccard · 6h ago
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!
freddie_mercury · 15h ago
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?
gradus_ad · 14h ago
Well, hot places do tend to have indolent populations.
akvadrako · 13h ago
Humans can thrive in nonideal situations. I would say too ideal is unhealthy.
Plus the effect might be small or something easily adapted to.
0cf8612b2e1e · 7h ago
…in the nordics you should have them sleep outside…
Is this a joke or are the Nords breeding a race of supermen Vikings a la the Fremen?
abxyz · 19h ago
Another example is Ureaplasma Parvum which is treated as a serious STD in parts of the world but almost never acknowledged as an STD in the U.S. and therefore almost impossible to get tested for and treated for in the U.S. There’s an entire reddit about it: https://www.reddit.com/r/Ureaplasma/
An Argentinian friend of mine said you get cancer from drinking beverages that are too hot. He sent the Wikipedia page to prove it but only the Spanish version of the page had this information.
Is this another example of culturally specific health "facts" or have I just missed something?
viciousvoxel · 16h ago
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.
Heard this in France too from MD. Link between drinking too hot (over 60°C) and oesophagus cancer
ifwinterco · 16h ago
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
nradov · 12m ago
Huh? How does the straw matter and what is the mechanism of action here? Citation needed.
SwtCyber · 16h ago
The "hot drinks cause cancer" thing is surprisingly legit
SwtCyber · 16h ago
Makes you realize how much of what we think is "settled science" is often just what gets repeated in a given language or culture
decimalenough · 14h ago
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.
edmundsauto · 8h ago
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
hnthrowaway121 · 13h ago
> 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.
pcthrowaway · 19h ago
Do you mind sharing a promising article in Japanese which can be translated?
jwrallie · 17h ago
I just took the first link from a Google search that looked not to be advertisement (edit: but still kinda is)
This makes me wonder how to search for content in another language? I mean most sites are almost trivially translatable by now.
OJFord · 13h ago
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.)
thaumasiotes · 16h ago
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.
dillydogg · 16h ago
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.
SwtCyber · 16h ago
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.
dillydogg · 15h ago
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.
joshuajooste05 · 11h ago
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!
catigula · 11h ago
>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.
kjkjadksj · 10h ago
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.
catigula · 9h ago
Completely different argument.
kjkjadksj · 9h ago
It was an example of research on women’s health being underfunded or underresearched.
catigula · 9h ago
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.
vpribish · 8h ago
maybe you could presume sincerity and not respond like a prick?
catigula · 8h ago
Literally everything I said was completely matter of fact. The prick is you.
pcthrowaway · 19h ago
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
codetweep · 22h ago
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.
twodave · 10h ago
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…
emmelaich · 21h ago
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.
> 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.
twodave · 1d ago
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.
tptacek · 1d ago
The article mentions it. If you bailed before that point, you bailed just before it got really good.
fsckboy · 23h ago
>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.
setopt · 22h ago
> 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.
twodave · 10h ago
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.
streptomycin · 23h ago
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.
SwtCyber · 16h ago
It's less about scarring inside the uterus, and more about chaos in the neighborhood
mlyle · 23h ago
You don't understand why uterine cells screwing up the fallopian tubes or ovaries would cause infertility?
cantor_S_drug · 1d ago
I heard about this disease through an education channel.
> 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.
Llamamoe · 5h ago
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
SwtCyber · 16h ago
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
echelon · 14h ago
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.
at_a_remove · 21h ago
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.
a2tech · 16h ago
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.
soared · 13h ago
Sounds like you need to start going to a different hospital.
Sniffnoy · 21h ago
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.)
Nasrudith · 21h ago
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.
grumpy-de-sre · 21h ago
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].
Just wait til you find out men can get it (extremely rare)
abhishaike · 23h ago
This is in the article!
bravesoul2 · 23h ago
Is that with or without hormone treatment?
lostlogin · 21h ago
There is a strong correlation with hormones. It’s in the post.
bravesoul2 · 15h ago
Thanks I wanted to see the commenters perspective and if they have different information or opinions.
ddingus · 23h ago
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!
BobbyTables2 · 4h ago
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”)
throaway2501 · 2h ago
men’s health clinics aka read a porsche magazine in the lobby and give us 500 bucks
lazyasciiart · 22h ago
“endometriosis is also found in men with a total of 16 cases previously reported in the literature”
> 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
RamblingCTO · 17h ago
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.
anon291 · 7h ago
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.
ddingus · 23h ago
[flagged]
tomhow · 14h ago
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.
shakna · 20h ago
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.)
pcthrowaway · 19h ago
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.
kqr · 18h ago
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.
shakna · 18h ago
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.
basisword · 17h ago
>> 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.
unixhero · 21h ago
On other areas it's the other way around, breast cancer gets a lot of attention while prostate cancer gets less.
basisword · 17h ago
>> 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.
mattigames · 21h ago
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"
enaaem · 16h ago
I agree. It is time for men activists to vote for parties that put more money in fixing homelessness and mental health.
morsch · 20h ago
Oh there are various disbalances at work. Maladies that affect the poor are underfunded as well.
grumpy-de-sre · 22h ago
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".
d1sxeyes · 21h ago
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.
dapper_bison17 · 11h ago
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 :)
breeding_suds837@simplelogin.com
amai · 17h ago
Many doctors just prescribe birth control pills as treatment for endometriosis and call it a day.
The New York Times used to run a series of medical case studies in their magazine, and over and over again the story was essentially that the patient sought care from primary care and specialists, without success, and were generally miserable, until a miraculous event happened, like a friend's aunt knowing someone at Johns Hopkins, and that doctor having the time to think about it. The problem was incredibly evident for female patients.
I don't know whether this is a result of doctors being burned out by the system that they work in, a certain doctorial arrogance that diminishes their listening skills, over-reliance on heuristic diagnoses, some kind of ignorance of womens' conditions, or even a kind of medical misogyny. But it pushes people pretty quickly towards Dr Google and sometimes, sadly, into quackery, and that can't be a good thing.
The cause is pretty easy. Patients aren't treated like mysteries, they're treated like BAU Jira tickets - just get it done so you're on to the next one. The system is built to handle the 90%. If you fall into that other 10%, it won't work well for you. If you have provider companies and insurances pressing you to hit some metric, that's what you have to do. If you are concerned about malpractice, then you have to just read from the Epic system. No surprise we're in this situation.
We need more doctors. The nation has grown, our medical professionals and courts must scale up. Automation isn't going to solve everything.
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).
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’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.
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.
(Bone tuberculosis)
Which project did you use?
https://github.com/OpenHealthForAll/open-health
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.
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 have no idea what good GPs serve besides flu testing. Sounds unfair but they generally seem uninformed about pretty common medical conditions.
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'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.
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.
https://x.com/deedydas/status/1933370776264323164
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.
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".
LLMs already work fantastically with pretty good UX.
[citation needed]
A family member ran into this with a brain tumor, which for a patient presenting with a headache is a 1% likelihood. Slightly elevated blood pressure was the focus in that case. Persistence and a subtle symptom changed triggered the CT scan that ultimately led to the diagnosis about 8 weeks later. Unfortunately with melanoma, 8 weeks is a long time.
Ultimately there’s no right answer. 99% of people with headaches have high blood pressure or other “normal” causes. Sending 1,000 people to CT to identify 5 tumors will cause 50 other complications.
Think of doctors like a helpdesk in a big company. Open a ticket, but work your network to get someone who isn’t dumb to think about it. If you’re too poor or don’t have friends and advocates, your outcome will be no mas.
This is something frequently missing from discussions like this.
Something that has a fairly small per-patient risk like a CT scan, causes far more pain than reduced missed diagnoses would solve if applied across the whole population.
asking as someone that had it
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
The reason the “family member or friend who knows someone who can recommend a doctor” seems to work well, in my experience, is because that doctor then has some motivation to actually care, as the patient is connected to someone they already know and care about.
Our medical system financially incentivizes doctors to see as many patients as possible, but doesn’t financially incentivize actually making them better. For that, the system just hopes that doctors will care, without giving them the room to do so.
We have progressed fantastically on the common medical conditions, but once you get into more rare stuff it gets a lot harder. Doctors have huge breadth of knowledge, but the sum of human medical knowledge could never fit into a human brain, even within a specialty, and even then there's so much we are not even close to understanding or knowing.
And for rarer stuff that is just getting discovered and learned about, there will only be a few specialists who are the ones figuring it out. That's why you go to lots of doctors that offer nothing, then a hint directs you to the doctors that are in the cutting edge of expanding knowledge.
Even if we financially incentivized each and every doctor to spend hours or days trying to find out what's going on with a patient that the doctor can't help with their current knowledge, it's quite likely that doctor could never help on the basis of a single patient. Medicine advances through discovery in groups of people and transferring knowledge from the results of one patient to others, incrementally. A single patient is far less likely to lead to advancement than a doctor having a group of people with similar symptoms.
The financial incentive for this discovery comes from research hospitals that collect these difficult cases, and obtain federal research grants from the National Institute of Health that allows them to do research and publish papers and share the knowledge. The proposed budget for the US drastically slashes this, greatly reducing our ability to advance medicine. And in advance of the budget cuts, the NIH is in violation of current contracts stopping payment, resulting in massive waste as research dies on the vine.
So what I'm trying to say is that the logistics of advancing medicine require grouping patients, and the place where that happens is at research hospitals, not at the local community doctor for everyday care. And our society is choosing, consciously or unconsciously, to drastically reduce access to that type of care.
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.
This worldview requires believing that doctors dgaf about their family members.
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.
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)
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.
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...
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.
Edit: https://www.uchicagomedicine.org/forefront/news/2023/august/...
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.
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.
Sorry to annoy you.
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.
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.
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.
People want a pill to solve the ailments they have.
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/
The path to figuring it can be long and sometimes improbably. For example, somebody I know was watching a youtube channel they like, and one of the creators put out a side-video about a short informational cartoon they made about their own journey discovering they had endometriosis -- which also echoed this same diagnostic pattern.
My friend saw something in the cartoon that seemed familiar, decided to go get a biopsy, and voila - a lifetime of pain was finally answered. She was in her late 40s, and decided to just go get surgery and now a few years and a hysterectomy later lives pain free.
I spent over a year going through the Canadian healthcare system, seeing different doctors. Most either brushed me off or implied it was all in my head and normal exercise would fix it (I am fairly active and have a healthy BMI). Even the few who took me seriously refused to run further tests or offer any treatment.
Eventually, I gave up and saw a private urologist. He looked at my results, immediately ordered more tests, and it was obvious from the new data what was going on. He prescribed HCG, and within a month I felt like a different person. Symptoms gone, T levels back in range.
Really wish more doctors took the time to actually listen, especially when a patient clearly isn’t doing well despite "normal" labs.
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.
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 do know some people see an improvement on migraines even on traditional BC, but the hierarchy is pretty much: nothing < traditional BC < mini-pills.
One of my best friends faced a similar struggle and took things into her own hands.
Through a lot of trial and error and a lot of studying, she's been able to overcome most endo symptoms and has started her own program where she teaches other women how to do the same.
I'd love to connect you to her if you want!
She's already helped around 30 women with similar struggles. Some have managed to get rid of bloating in a matter of weeks, one even has Crohn's disease and for the first time in 14 years woke up without any stomach pain.
My friend's program isn't a "magic pill" obviously but it sounds like it's worth a shot.
Let me know :)
The N-Acetyl Cysteine Protocol Morning and Evening: 600mg NAC Oregano Oil (min. 40mg Carvacrol) Black Seed Oil (1 teaspoon)
For the natural oils, my strategy is to mix 235ml Nature's Way Black Seed Oil with 30ml Natural Factors Oil of Oregano, take one teaspoon morning and evening. This mix delivers the prescribed amount of carvacrol per teaspoon. Most of my problems were with the upper respiratory tract and taking it orally this way coats the throat well.
The other intervention that had big effect on my health in the last few years was adding a daily mineral supplement. I'm an avid tea drinker and it turns out that can interfere with your absorption of minerals, plus with the nutrition crisis it is not clear if our produce even has enough for optimal health. I simply take the maximum recommended supplementary dose of Mg, Ca and Zn.
Also, check your Vitamin D levels if you haven't. If you have been dealing with this for 12 years, I assume you have already ruled that out, but I'm mentioning it for completeness. Good luck.
P.S. One last thing to mention - try the carnivore diet for a bit (if you haven't, of course). I know people who have found it a big help, but then again for some it didn't do anything. Give it a month, see how it goes, obviously stop immediately if you get serious symptoms.
“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.
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.
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.
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.
Did the NYT evenly select male and female patients? Knowing about their political leanings, I highly doubt it.
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.
One of this is sex during menstruation. I was instructed that it was not a problem but in Japan they specifically instruct that it is discouraged because there might be a link with Endometriosis.
If you try to Google if sex in menstruation can lead to infertility you are going to find little information in English, but you are going to find many hits in Japanese.
* In the UK you should not start solids before 6 months, in France you can start at 3, and should at 4.
* Baby bed room temperature: in the UK 16 degrees Celsius, France 19 degrees, in the nordics you should have them sleep outside while I've been told that in Hungary 25 degrees is considered optimal.
Don't underestimate how much of health science is embedded folklore knowledge by people who thought they managed to extract signal from noise with a lot of confounders, especially if the patient is not sick or cannot express their subjective experience.
(that said, as a new dad, I'm also deathly afraid of SIDS so I still stuck by the American recommendations, sleep be darned)
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.
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.
- 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.)
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.
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.
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)
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.
Definitely worth a conversation!
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?
Plus the effect might be small or something easily adapted to.
Full background: https://www.reddit.com/r/Ureaplasma/comments/qavqf1/the_urea...
Is this another example of culturally specific health "facts" or have I just missed something?
https://www.mskcc.org/news/burning-issue-truth-about-hot-dri...
In european/North American countries where people normally drink out of ceramic mugs, people generally end up drinking hot drinks at a lower temperature
> 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
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.
https://emishia-clinic.jp/low-dose-pill/on-my-period-sex/
(And if you have a country filter/hint set on your search engine of choice, you disable or change it appropriately.)
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.
NB - It is a known phenomena in bone marrow transplant recipients that the donor DNA can be taken up by host cells by unknown mechanisms, so it isn't a guarantee that the endometriosis was developed from the transplanted bone marrow.
I think this is a story too common in women's healthcare.
It's often massively underfunded and underesearched, another symptom of the fact our society had not let women into STEM/politics for decades, and continues to erect barriers to encourage them not too.
I like the fact you spelled out the incentives for PhDs to do so at the end ;). Would be great!
Funny, my experience is the absolute opposite of this claim.
Also, I could be wrong but I'm pretty sure breast cancer is the single most well-funded areas of cancer research.
There's a toolbox a certain type of person likes to reach for even when the evidence is inconsistent.
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...
...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.
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.
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.
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.
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.
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.
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.
I pointed out her history (or hystery, heh) and the kinda obvious gluey, webby bits in the pictures (they're quite visible once you look at enough of them).
Then I grilled him on which of the then-three brands were on the market and which were had on hand. Dude acted like he was just yanking a bad video card on a Friday afternoon, which I found less than optimal.
I was not surprised when, post-surgery, the rest of the staff attempted to hustle us out the door. I had abort their well-rehearsed ejection procedure to get aftercare instructions ... and to make sure the scripts had already been called in ... and then to get the follow-up appointment cemented and the "oh shit something has gone wrong" post-surgical emergency contact information. I suppose in the future they will have a kind of water slide from the recovery room into the parking lot, and they just will aim for the open passenger-side door.
Your water slide to the parking lot is an apt description—-I can 100% believe people wanting such a thing.
1. https://pmc.ncbi.nlm.nih.gov/articles/PMC10150018/
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!
(I don’t consider low-T clinics as “healthcare”)
I don’t think this is enough to affect funding.
https://pmc.ncbi.nlm.nih.gov/articles/PMC5833878/
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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
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.
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.)
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.
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.
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.
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.
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.
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".
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 :)
breeding_suds837@simplelogin.com
So much for it being an interesting disease.