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.
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.
My significant other is going through this situation, and in my experience it seems as though most doctors just simply don’t care to actually find a diagnosis (or at least, don’t have the time or motivation to care), combined with a hefty dose of “that’s not my job”. My SO has been to specialist after specialist who spends a grand total of 2 minutes listening to the symptoms, followed by “well let’s do some blood tests and see what they say” (ignoring that the last 5 doctors already did blood tests). And then when the blood tests come back with nothing obvious, the doctor just throws up their hands and says “well I don’t know what to do, you should go see <other specialist>”.
The reason the “family member or friend who knows someone who can recommend a doctor” seems to work well, in my experience, is because that doctor then has some motivation to actually care, as the patient is connected to someone they already know and care about.
Our medical system financially incentivizes doctors to see as many patients as possible, but doesn’t financially incentivize actually making them better. For that, the system just hopes that doctors will care, without giving them the room to do so.
Another way to look at it instead of "they don't care" is "they have nothing they can offer."
We have progressed fantastically on the common medical conditions, but once you get into more rare stuff it gets a lot harder. Doctors have huge breadth of knowledge, but the sum of human medical knowledge could never fit into a human brain, even within a specialty, and even then there's so much we are not even close to understanding or knowing.
And for rarer stuff that is just getting discovered and learned about, there will only be a few specialists who are the ones figuring it out. That's why you go to lots of doctors that offer nothing, then a hint directs you to the doctors that are in the cutting edge of expanding knowledge.
Even if we financially incentivized each and every doctor to spend hours or days trying to find out what's going on with a patient that the doctor can't help with their current knowledge, it's quite likely that doctor could never help on the basis of a single patient. Medicine advances through discovery in groups of people and transferring knowledge from the results of one patient to others, incrementally. A single patient is far less likely to lead to advancement than a doctor having a group of people with similar symptoms.
The financial incentive for this discovery comes from research hospitals that collect these difficult cases, and obtain federal research grants from the National Institute of Health that allows them to do research and publish papers and share the knowledge. The proposed budget for the US drastically slashes this, greatly reducing our ability to advance medicine. And in advance of the budget cuts, the NIH is in violation of current contracts stopping payment, resulting in massive waste as research dies on the vine.
So what I'm trying to say is that the logistics of advancing medicine require grouping patients, and the place where that happens is at research hospitals, not at the local community doctor for everyday care. And our society is choosing, consciously or unconsciously, to drastically reduce access to that type of care.
I agree that it seems we can't rely on the medical system specifically in the case of Endometriosis.
One of my best friends faced a similar struggle and took things into her own hands. Now 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/your wife to her if you want!
What our "system" seems to actually incentivize is keeping people chronically ill so that they're forced to continually pay for their non-treatment.
It's hard not to be incredibly cynical in the face of things like this. Way more than once have I thought "this is a cruel and unusual punishment" -- wait aren't those prohibited?? Oh right we get around that by making cruelty usual.
I see this view sometimes and it really annoys me.
The number of doctors and nurses that attempt to keep people chronically ill rather than curing them if possible, is essentially zero. People get into that field frequently because they actually care, and people that actually care are the most likely to not follow a vague profit incentive that actively hurts people.
Similarly, most medical researchers would love to cure diseases, and actively seek out jobs where they do so and will object if asked to suppress curative research.
To the extent that what you describe exists, it is limited to MBA people at insurance companies and big pharma determining what gets funded for research. While exceptions always exist, the incidence of that attitude among the people actually doing the work is very close to nil.
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.
I think we agree on this point almost entirely. But let’s not pretend the doctors, nurses, and researchers are running the show. This attitude of mine persists because of the way the insurance companies run the system: profits first, patients last.
A chronically ill person is a risk to an insurance company. They could turn into a huge hospital bill for an extended stay any day now. Or, worse, become a permanent disability recipient.
A healthy person is a huge asset to an insurance company. Collect premiums for decades before they need much of any disbursal! They're still likely to be expensive at end-of-life, but you've profited WAY more from their initial healthy years.
(This, of course, is why insurance companies want to consider health in setting premiums, and why it's SO IMPORTANT that the government not allow that and keep things group-based. Because then you have the incentive to help the unhealthy people instead of just "milking the unhealthy people.* I pay the same as my coworker for my insurance. The insurance does NOT want my chronic condition to make me much more expensive to them than my coworker. They'd much rather it go away. Sadly, nobody can do that today.)
What the insurance companies don't* have is the incentive to actually push doctors and facilities to spend more time and money on looking for rare issues for unhealthy people. Because the searching is expensive, and there's a high risk it won't actually find a magic bullet.
So they'd rather have the median patient go from unhealthy to healthy, but if we want them to invest more in the long tail, it's gonna have to come from regulation.
And targeted investment in better detection*. But better detection is harder to sell than "expensive treatment drug" so again. Might need to get the state involved.
There are a lot of doctors and researchers running research arms of large, well funded institutions. Sloan Kettering for example.
I'll grant you that that is a low percentage of the total US medical research spend. But also, most of the world does not have the same profit motive; in most Western countries, a cure is categorically cheaper for everyone than a chronic illness, because healthcare is paid for by taxpayers. And countries besides the US do plenty of medical research.
If the hypothesis were true that there exist cures to many diseases that simply haven't been explored due to profit motive, then I would expect countries without that profit motive to have a higher proportion of cures among their medical.discoveries than the US. I don't believe that is true though.
Basically my point is that the effect you mention likely has little actual impact on the larger medical field.
There's pretty universally much more demand for doctors than supply. And insurance companies, the other major power that's, to an upsetting degree, "running the show" would love for everyone to be perfectly healthy so they can collect premiums and never pay out.
This is totally untrue. Slow rolling early care to raise total dialysis likelihood was sufficiently widespread. Not the majority of docs but sufficiently large numbers. It is defensible medically to do that because you don’t need to treat something that hasn’t happened yet.
How widespread is "sufficiently"? Especially since you also mention it's a minority? I've not heard of the specific example you mention, do.you have more details?
I feel this is more a societal failing than a medical one. Most people don’t want to take better care of themselves: eating better, portion control, more regular exercise, etc. Too hard.
People want a pill to solve the ailments they have.
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.
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.
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.
How? I'd expect them to already have standardized lists of the most useful next thing to investigate given what's already known, and a modern "AI" would actually be worse at that than some sort of solver engine with a database of costs/risks (for tests) and conditional probabilities.
Maybe if they're still using (digitized versions of) paper flowcharts things could be improved, but the most powerful tech should be old-school stuff rather than modern "AI".
No normal person would actually be able to use a specialized solver database, the woman in this story would already be dead before the guy figures out that such a thing exists and manage to make an account. https://x.com/deedydas/status/1933370776264323164
LLMs already work fantastically with pretty good UX.
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.
Frontline medicine is all about “just do x” hacks to try to move quicker. We turn people into a fault tree, and enforce that with EMR and audit/review you create a bias to focus on the 80/20 approach. Essentially turning medicine into a helpdesk.
A family member ran into this with a brain tumor, which for a patient presenting with a headache is a 1% likelihood. Slightly elevated blood pressure was the focus in that case. Persistence and a subtle symptom changed triggered the CT scan that ultimately led to the diagnosis about 8 weeks later. Unfortunately with melanoma, 8 weeks is a long time.
Ultimately there’s no right answer. 99% of people with headaches have high blood pressure or other “normal” causes. Sending 1,000 people to CT to identify 5 tumors will cause 50 other complications.
Think of doctors like a helpdesk in a big company. Open a ticket, but work your network to get someone who isn’t dumb to think about it. If you’re too poor or don’t have friends and advocates, your outcome will be no mas.
> Sending 1,000 people to CT to identify 5 tumors will cause 50 other complications.
This is something frequently missing from discussions like this.
Something that has a fairly small per-patient risk like a CT scan, causes far more pain than reduced missed diagnoses would solve if applied across the whole population.
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.
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.
Are you a woman? Do you take homona birth control other than the "Mini pill"? My wife read online that it's not safe to take typical hormonal birth control on the standard pill if you get migraines with auras, because it increases your risk of stroke and mentioned her migraines to her gyno, who was like "Oh shit yeah we have to put you on the mini pill then." Which was crazy, because aura migraines wasn't on the laundry list of possible conditions on the intake form. Anyway, she got fewer migraines after changing birth control, so...maybe relevant?
I recommend taking probiotic Bacilis Subtilis gummies if you feel a migraine starting, I don't know why it works but it does (and I first heard about Bacilis Subtilis hear on HN.)
That really sucks.
It sucks even more that your situation is common to many many women.
One of my best friends faced a similar struggle and took things into her own hands.
Through a lot of trial and error and a lot of studying, she's been able to overcome most endo symptoms and has started her own program where she teaches other women how to do the same.
I'd love to connect you to her if you want!
She's already helped around 30 women with similar struggles.
Some have managed to get rid of bloating in a matter of weeks, one even has Crohn's disease and for the first time in 14 years woke up without any stomach pain.
My friend's program isn't a "magic pill" obviously but it sounds like it's worth a shot.
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!
"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.
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.
One interesting thing I observed by being trilingual is that different countries’ medical systems will give different and sometimes contradictory instructions when you Google for some medical information.
One of this is sex during menstruation. I was instructed that it was not a problem but in Japan they specifically instruct that it is discouraged because there might be a link with Endometriosis.
If you try to Google if sex in menstruation can lead to infertility you are going to find little information in English, but you are going to find many hits in Japanese.
There are so many more of these. A common one is everything to do with babies.
* In the UK you should not start solids before 6 months, in France you can start at 3, and should at 4.
* Baby bed room temperature: in the UK 16 degrees Celsius, France 19 degrees, in the nordics you should have them sleep outside while I've been told that in Hungary 25 degrees is considered optimal.
Don't underestimate how much of health science is embedded folklore knowledge by people who thought they managed to extract signal from noise with a lot of confounders, especially if the patient is not sick or cannot express their subjective experience.
Also, in the US people have a deathly fear of bedsharing with the baby due to concerns about sudden infant death syndrome (SIDS) and yet bedsharing is common in places like Japan while they also have a much lower infant mortality rate. Apparently, newborns just sleep very poorly lying on their backs alone in cold, hard cribs rather than nuzzling against their moms' breasts. As a result, the common advice in the US has not only led to skyrocketing cases of postpartum depression, but also delayed milestones such as head lifting, plus more cases of plagiocephaly and torticollis.
(that said, as a new dad, I'm also deathly afraid of SIDS so I still stuck by the American recommendations, sleep be darned)
Some of that fear isn’t necessarily unfounded. In America the people are larger and the beds are softer. This creates a larger, deeper divot around the adult for the baby to roll in to and suffocate.
Most of the American parents I know practiced bed-sharing including myself. But we would also answer "no" when asked about at the doctor's office because that's the "right" answer. So... I am skeptical about any negative statistics on bedsharing. We're not obese and don't drink or do drugs. That probably mitigates a huge amount of associated risk.
If you ask around among other parents you’re going to find that bed sharing is a lot more common than the medical community wants it to be. We had a lot of reasons for doing it and so did many of our friends.
If I recall correctly, there was some recent research connecting the cholinergic system to SIDS, pointing at possible changes in practices to reduce the risk.
I've come to think the American norm is something of a self-fulfilling prophecy. Bedsharing becomes dangerous mostly when the parents fall asleep intoxicated. You might have noticed that you're much more likely to wake up with your arm partially numb if you pass out drunk than if you go to sleep sober. But because bed sharing is discouraged, it's mostly less responsible parents who do it, which creates a stronger apparent correlation with infant suffocation.
And not just alcohol. America is highly medicated. Someone who takes sleeping pills for example is unlikely to be subconsciously aware of their surroundings.
- How much alcohol can a pregnant person drink? (Not too much, obviously, but is a glass of wine a couple of different days in the third trimester okay? Probably, but it varies a lot deoending on which country you're in.)
- When can children start eating green leaves? (I don't know, but even different counties in Sweden have different guidelines on that one.)
- Should infants sleep on their tummy or back? (Definitely on their back. There is no argument there. But when I was an infant -- which is not that long ago, parents were advised otherwise.)
> How much alcohol can a pregnant person drink? (Not too much, obviously, but is a glass of wine a couple of different days in the third trimester okay? Probably, but it varies a lot deoending on which country you're in.)
It's important to differentiate a low individual risk for you, vs what that means to a whole population.
You will easily find someone willing to say "oh I had two glasses of wine a week while pregnant and my kid was fine".
If everyone started drinking 2 glasses of wine a week in the third trimester, FAS rates will increase, and mean IQ score will dip. Will they dip by a lot? Probably not, but definitely not zero. So of course anyone in a position to make a society-wide recommendation, recommends "no alcohol".
Individual parents may look at data and say, that's a risk they're willing to take.
> 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.
For sleeping on their back. Our youngest daughter would not sleep on her back. She still sleeps on her tummy with arms folded under her. The only way she sleeps otherwise is in the car seat when properly exhausted. Put her to bed and she will turn around and fall asleep. So what does medicine say then?
Sleeping on the back only matters when they are very young. It’s for when they don’t have the strength to turn themselves out of a face-down / suffocating position. That’s why you practice tummy time (neck/head lifting) with an infant. Once they are older they can sleep how they like
Depends on the kid too. All 3 of my kids could lift their head up when they were born. A couple of times I forgot all babies aren't like that and picked up a friend's baby without adequate support.
It says that there is like a 10x risk of SIDS in the first four months of life with tummy sleeping.
I don't agree with her on everything, but Emily Oster's chapter on SIDS (in the second book I think, Cribsheet) I think does a good job outlining the data on it. And my brother just had a kid who also would absolutely not sleep on his back. Once he could roll he just sleeps on his tummy (but once they can roll SIDS is not really an issue)
What I was taught is that one should not put them down on their tummy, but if they're able to flip themselves over when put on their back they're no longer so likely to die from it.
> But when I was an infant -- which is not that long ago, parents were advised otherwise
Medicine is wild. Lots of things that were taken as gospel even 15 years ago have been completely flipped on their head. The NHS massively changed their advice last year on asthma treatment and it’s basically the opposite of what they said before. We’ve seen the same with musculoskeletal injuries, nerve injuries and just general recovery.
Sorry, but what was the change? Adding corticoid inhalers when treating an asthma episode? Curious since I have asthma and didn’t hear about this change yet.
The short of it was that they decided salbutamol was overprescribed and shouldn’t be given to anyone who isn’t taking a corticosteroid inhaler at the same time. The advice has changed from “if you feel like you need your blue inhaler take it” to “your asthma should be managed by your corticosteroid dose, and if it’s not you should adjust”. Obviously not suitable for everyone but for people like my dad it got him from using his reliever once a week to not having an active prescription for it anymore.
That was a worldwide change after they figured out long acting beta agonists were basically killing people because they don’t treat the underlying inflammation like inhaled corticosteroids do.
Yeah that doesn’t surprise me - I just don’t have enough knowledge of outside the UK to know if it was advised elsewhere. Anecdotally, my breathing is so much better since I’ve adjusted to the correct dose and never missing one, I’ve gone from needing a reliever with me at all times to not using it once in a year.
The temperature thing is one I always wonder about.
The WHO claims the ideal overnight temperature for sleeping is 18 degree (C). I lived in Vietnam for a decade and to a rough approximation 0% of the population ever experiences 18 degrees overnight for sleeping. And I imagine it's not too different in much of Thailand, Indonesia, India, etc.
I'm pretty dubious that hundreds of millions, maybe billions, are thriving in "suboptimal" overnight temperatures!
Does the African savanna regularly get down to 18c at night, such that we'd expect that to be some kind of evolutionary equilibrium that just happens to map to (northern) European and North American norms?
Another example is Ureaplasma Parvum which is treated as a serious STD in parts of the world but almost never acknowledged as an STD in the U.S. and therefore almost impossible to get tested for and treated for in the U.S. There’s an entire reddit about it: https://www.reddit.com/r/Ureaplasma/
An Argentinian friend of mine said you get cancer from drinking beverages that are too hot. He sent the Wikipedia page to prove it but only the Spanish version of the page had this information.
Is this another example of culturally specific health "facts" or have I just missed something?
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
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.
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.
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.
To help support the "retrograde menses is incomplete" discussion; I was involved in a case where a woman had a bone marrow transplant for her CML. She later developed "appendicitis" when but when the tissue sample came to the pathologist, the appendicitis was actually endometriosis. Even more, the endometriosis was XY karyotype, ie derived from the bone marrow transplant. We wrote up a case report.
NB - It is a known phenomena in bone marrow transplant recipients that the donor DNA can be taken up by host cells by unknown mechanisms, so it isn't a guarantee that the endometriosis was developed from the transplanted bone marrow.
It's one thing to know, in theory, that stem cells can end up in strange places after transplantation, but to see that play out in something as enigmatic as endometriosis really underlines how little we know about the underlying mechanisms.
It was surprising to me when I saw the cells under the scope when I expected appendicitis! The karyotype was just for fun, but the XY testing was quite unexpected.
My girlfriend has endometriosis, I hadn't really read much about it until now, thank you for writing!
I think this is a story too common in women's healthcare.
It's often massively underfunded and underesearched, another symptom of the fact our society had not let women into STEM/politics for decades, and continues to erect barriers to encourage them not too.
I like the fact you spelled out the incentives for PhDs to do so at the end ;). Would be great!
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
The article sort of glosses over a major distinction regarding the surgical approach to endometriosis -- 90+% of OB/GYNs are trained to ablate (burn-to-destroy) the affected tissue, whereas more recently, a crop of surgeons have begun to specialize in excising a wide area of tissue surrounding the affected tissue. Many times, the tissue to destroy is not on the surface - it is deeply infiltrating what it has adhered to. Burning it is just like cutting grass, it'll come right back. Success rates with excisional surgery are markedly better, but not a silver bullet.
Not to mention the burning creates a lot more scar tissue, which greatly impacts future reproductive prospects depending on where the burning is taking place…
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.
>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.
> 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.
According to my wife’s surgeon (she had endometriosis removed in 2008) there is some belief that the condition can actually cause the womb to become less hospitable to egg development, i.e. the fluids en utero actually weaken the health of the eggs.
The uterus is not the only thing involved in infertility. More generally, endometriosis probably affects fertility in multiple different ways, and a woman with endometriosis and fertility issues may never know what her specific problem is.
On the plus side, IVF works pretty well for many women with endometriosis. IVF patients with endo have only somewhat worse stats than other IVF patients.
> 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.
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.
The comparison to cancer is honestly kind of chilling. The fact that endometriosis lesions pick up the same mutations, adapt to evade the immune system, and yet are considered "benign" is such a medical blind spot
There are probably other pluripotent cell types that do the exact same thing, but just don't get detected since very few cell types slough off with a hormonal cycle.
There are probably many more instances of this disease in men that never get triggered and discovered due to atypical hormonal levels being required.
So, why don't cancer treatments work here? Or would they likely work here but they largely haven't been tried yet? (See also codetweep's comment about surgery.)
Endometriosisis is 'benign' in the self-contained sense only. I would imagine that changes the target profile. I don't think there is are any rigid 'out of scope' policing drugs or biological mechanisms for that. As opposed to cancerous malformed biomarkers which scream "I shouldn't exist!" to the immune system.
I doubt chemotherapy drugs have a favorable risk/benefit ratio. The original article notes that somatic DNA changes might be involved, so perhaps immunotherapy might be useful. Interestingly this is being studied [1].
I had to gently chide a surgeon who came out in the middle of a friend's hysterectomy (and bonus ovary removal) to do a kind of "drive by, not expecting any kind of feedback" picture show in the middle for not having a plan on adhesion barriers. He hadn't planned on doing them!
I pointed out her history (or hystery, heh) and the kinda obvious gluey, webby bits in the pictures (they're quite visible once you look at enough of them).
Then I grilled him on which of the then-three brands were on the market and which were had on hand. Dude acted like he was just yanking a bad video card on a Friday afternoon, which I found less than optimal.
I was not surprised when, post-surgery, the rest of the staff attempted to hustle us out the door. I had abort their well-rehearsed ejection procedure to get aftercare instructions ... and to make sure the scripts had already been called in ... and then to get the follow-up appointment cemented and the "oh shit something has gone wrong" post-surgical emergency contact information. I suppose in the future they will have a kind of water slide from the recovery room into the parking lot, and they just will aim for the open passenger-side door.
I 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.
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.)
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.
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.
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.
>> 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.
>> 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.
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"
Honestly it's probably just because the condition responds well to hormonal therapy. If you've got a cheap and effective treatment available for a condition it's hard to justify spending research dollars on digging deeper into it (particularly something as strange as Endometriosis, eg. where do you even start looking).
The strong genetic component also makes it somewhat unlikely that it's something we'll be able to ever eliminate completely but perhaps there will one day be targeted drugs that can stop disease progression. It's good to see more research dollars being made available in recent years.
There's a lot of other conditions that receive a similar lack of attention, for a common male analogue "chronic pelvic pain syndrome".
The reason why breast cancer became a cause celebre is that it really was a taboo disease that couldn't be talked about. Cancer generally, but breast cancer even more. There was a time when "awareness" really was important because people were not aware.
That progress has happened with it doesn't mean much to things like endometriosis, which has a mean time to diagnosis of ~a decade, a point made in TFA. People commonly suffer undiagnosed with it for ten years due to a collective failure. Finding a cure might be very difficult, but fairly rapid diagnosis really shouldn't be, it's not like Alzheimer's.
The numbers presented are stark: "Yet, it stands almost entirely alone in terms of how little funding the condition receives relative to the absolute number of lives it irrevocably alters for the worse: 10% of women (or 190 million) worldwide, with only $29M earmarked for them."
That's really bad. Like, really bad. It's not surprising that women might get very mad about this state of affairs.
The individual suffering from it probably shouldn't be lumped into some macro-social group of people who are 'playing victim while receiving equal treatment'. They're a person suffering from an extremely painful condition by no fault of their own. It could be your mom, your sister, partner, friend. How much money is raised for breast cancer makes no difference for their circumstance.
What's worse is that there are countless stories of women being denied care and treatment for this condition. It goes undiagnosed for years. Yet it's known to be debilitating in some cases. That's outside the bounds of normalcy and isn't made any better by hypothetical equal treatment.
I pity you for having to wake up every morning with such hate in your mind. I also hope you never have to experience a loved one - e.g. a mother, sister, or wife, go through the pains of a disease like breast cancer, endometriosis, ovarian cancer, etc.
And if you do, I hope for those around you, that you never say such an awful thing to them.
There's no question that diseases like endometriosis and breast cancer needs to go. The medical research community is very self-critical about anti-female biases and there are numerous papers and articles about it. And that's good. If endometriosis is not getting the attention it deserves, then push for it by all means. Men don't really understand it for obvious reasons. But it isn't a big task to get their support by creating awareness. Articles like this is a step in that direction.
But can we please avoid dragging men through the mud in matters they have no awareness or influence on? Why must a top-level comment about endometriosis, a disease that affects only women, implicate men in anyway? What makes you feel that men are fine with watching their female kin (or any women) suffer from any of those? Why would men like me even be reading this article if we aren't open to the experience of the others? Let's consider the fact that prostrate and testicular cancers don't receive anywhere near as much attention as breast and ovarian cancer. So the top comment is rhetorical and objectively false. Imagine if a man you know gets prostrate cancer and someone comments that there would be better treatment for it affected women too. How would you feel?
I hate saying this here on the comment section about an important medical condition. Can we discuss women's issues objectively without looking for ways to blame men somehow? Why such hostility against men? I see this far too often and on far too many random topics - it's disheartening and depressing. Look at the way the discussion thread progressed. The top comment that mentions men unfavorably and unreasonably is upvoted and defended, while the opposing views are passionately argued against and even flagged. This is actually a recurring and unhealthy pattern on HN. Expressing male perspective is an easy way to get flagged - even if no hostility is intended (mods please note). Is this how we're going to achieve awareness on gender-specific issues and gender parity?
Where in my comment do I even mention men? I was responding to a hateful comment from a person, not an entire gender.
Also, I guess I didn’t state my gender anywhere (I did not think it would be so relevant! Apologies for not realizing this), but I am a man. So I guess I expressed a “male perspective”. Hopefully that brings some joy to your day.
Sarcasm aside, I do think there may be some misunderstanding about how funding and advertising works for disease research. I am by no means an expert, but have found myself deeply embedded in this area for a while.
I’d be happy to talk with you more about these issues, if you’d like to drop a way for me to get in touch with you on signal, matrix, email or phone.
I'm not talking about your single comment. The entire problem here is the top comment and the peculiar responses to it. Many of your objections apply to that top level comment too. Yet you chose to reply only to people who objected to that.
Now, I did consider the possibility that you are not a woman. But that doesn't change the outcome, and neither does your sarcasm. People showing biases against their own kind is not unusual and that doesn't provide the missing justification. People sometimes aim for the easiest target and sometimes it's their own kind. Men showing bias against men is still bias and it's still not justified. Your 'male perspective' hardly invalidates those of the others.
And no, I don't want to discuss anything in private since it's hard for others to see the bias or point out any issues. And I don't agree with your argument on funding and advertising, since I have been at the receiving end of it in an extreme manner. You can quote as much technicality as you want, but that doesn't invalidate the fact that prejudices cause harm. Unfortunately, the modern society is oblivious of the boundary between empowerment and prejudice. I'm not against women in anyway and I sincerely wish for their well being too. All those problems can be solved cooperatively and without this hostility and the us-vs-them mentality. Instead, this sort of negative reinforcement will only splinter and harm the society in the long run. Reverse of sexism is still sexism, and it achieves nothing.
And yet you chose to reply to this comment instead of the parent :)
CW is a thing, cant's wish it away. Best to work on rules of engagement and being at least slightly productive about it. Small steps like https://www.astralcodexten.com/p/but-vs-yes-but. Seems trivial, but I'd love to see more informal rules like this enforced in practice.
I’m sure I don’t understand what you’re saying! Could you explain? I’m not being facetious, either. I’m not sure how posting this to the parent would have made any sense.
The money is not infinite in any sense so it is for many pragmatic purposes a competition, the diseases with more attention get more research, so it's in the reasonable interests of the people to advocate for the diseases that are most likely to affect them personally.
For sure.
I would like to point out for readers to think about the fact that if you are, say, a guy in your 30s, the women close to you getting breast cancer will also have a profound impact on your life. Likely a greater one than dying of prostate cancer in your 80s.
Maybe (hopefully) neither of those happen! Maybe you get prostate cancer in your 30s! I just hope one can realize that getting the disease oneself is not the only way the disease can affect them, far from it.
According to the American Cancer Society, it is estimated that there will be over 62,000 more cases of breast cancer than prostate cancer in the US this year, and will kill over 6000 more people.
>The American Cancer Society’s estimates for prostate cancer in the United States for 2025 are:
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 :)
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.
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.
My significant other is going through this situation, and in my experience it seems as though most doctors just simply don’t care to actually find a diagnosis (or at least, don’t have the time or motivation to care), combined with a hefty dose of “that’s not my job”. My SO has been to specialist after specialist who spends a grand total of 2 minutes listening to the symptoms, followed by “well let’s do some blood tests and see what they say” (ignoring that the last 5 doctors already did blood tests). And then when the blood tests come back with nothing obvious, the doctor just throws up their hands and says “well I don’t know what to do, you should go see <other specialist>”.
The reason the “family member or friend who knows someone who can recommend a doctor” seems to work well, in my experience, is because that doctor then has some motivation to actually care, as the patient is connected to someone they already know and care about.
Our medical system financially incentivizes doctors to see as many patients as possible, but doesn’t financially incentivize actually making them better. For that, the system just hopes that doctors will care, without giving them the room to do so.
Another way to look at it instead of "they don't care" is "they have nothing they can offer."
We have progressed fantastically on the common medical conditions, but once you get into more rare stuff it gets a lot harder. Doctors have huge breadth of knowledge, but the sum of human medical knowledge could never fit into a human brain, even within a specialty, and even then there's so much we are not even close to understanding or knowing.
And for rarer stuff that is just getting discovered and learned about, there will only be a few specialists who are the ones figuring it out. That's why you go to lots of doctors that offer nothing, then a hint directs you to the doctors that are in the cutting edge of expanding knowledge.
Even if we financially incentivized each and every doctor to spend hours or days trying to find out what's going on with a patient that the doctor can't help with their current knowledge, it's quite likely that doctor could never help on the basis of a single patient. Medicine advances through discovery in groups of people and transferring knowledge from the results of one patient to others, incrementally. A single patient is far less likely to lead to advancement than a doctor having a group of people with similar symptoms.
The financial incentive for this discovery comes from research hospitals that collect these difficult cases, and obtain federal research grants from the National Institute of Health that allows them to do research and publish papers and share the knowledge. The proposed budget for the US drastically slashes this, greatly reducing our ability to advance medicine. And in advance of the budget cuts, the NIH is in violation of current contracts stopping payment, resulting in massive waste as research dies on the vine.
So what I'm trying to say is that the logistics of advancing medicine require grouping patients, and the place where that happens is at research hospitals, not at the local community doctor for everyday care. And our society is choosing, consciously or unconsciously, to drastically reduce access to that type of care.
While I might be sympathetic to what you’re saying, endometriosis is not a very rare condition.
They genuinely don’t care. Don’t over think it
I agree that it seems we can't rely on the medical system specifically in the case of Endometriosis.
One of my best friends faced a similar struggle and took things into her own hands. Now 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/your wife to her if you want!
What our "system" seems to actually incentivize is keeping people chronically ill so that they're forced to continually pay for their non-treatment.
It's hard not to be incredibly cynical in the face of things like this. Way more than once have I thought "this is a cruel and unusual punishment" -- wait aren't those prohibited?? Oh right we get around that by making cruelty usual.
I see this view sometimes and it really annoys me.
The number of doctors and nurses that attempt to keep people chronically ill rather than curing them if possible, is essentially zero. People get into that field frequently because they actually care, and people that actually care are the most likely to not follow a vague profit incentive that actively hurts people.
Similarly, most medical researchers would love to cure diseases, and actively seek out jobs where they do so and will object if asked to suppress curative research.
To the extent that what you describe exists, it is limited to MBA people at insurance companies and big pharma determining what gets funded for research. While exceptions always exist, the incidence of that attitude among the people actually doing the work is very close to nil.
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.
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.
A chronically ill person is a risk to an insurance company. They could turn into a huge hospital bill for an extended stay any day now. Or, worse, become a permanent disability recipient.
A healthy person is a huge asset to an insurance company. Collect premiums for decades before they need much of any disbursal! They're still likely to be expensive at end-of-life, but you've profited WAY more from their initial healthy years.
(This, of course, is why insurance companies want to consider health in setting premiums, and why it's SO IMPORTANT that the government not allow that and keep things group-based. Because then you have the incentive to help the unhealthy people instead of just "milking the unhealthy people.* I pay the same as my coworker for my insurance. The insurance does NOT want my chronic condition to make me much more expensive to them than my coworker. They'd much rather it go away. Sadly, nobody can do that today.)
What the insurance companies don't* have is the incentive to actually push doctors and facilities to spend more time and money on looking for rare issues for unhealthy people. Because the searching is expensive, and there's a high risk it won't actually find a magic bullet.
So they'd rather have the median patient go from unhealthy to healthy, but if we want them to invest more in the long tail, it's gonna have to come from regulation.
And targeted investment in better detection*. But better detection is harder to sell than "expensive treatment drug" so again. Might need to get the state involved.
There are a lot of doctors and researchers running research arms of large, well funded institutions. Sloan Kettering for example.
I'll grant you that that is a low percentage of the total US medical research spend. But also, most of the world does not have the same profit motive; in most Western countries, a cure is categorically cheaper for everyone than a chronic illness, because healthcare is paid for by taxpayers. And countries besides the US do plenty of medical research.
If the hypothesis were true that there exist cures to many diseases that simply haven't been explored due to profit motive, then I would expect countries without that profit motive to have a higher proportion of cures among their medical.discoveries than the US. I don't believe that is true though.
Basically my point is that the effect you mention likely has little actual impact on the larger medical field.
There's pretty universally much more demand for doctors than supply. And insurance companies, the other major power that's, to an upsetting degree, "running the show" would love for everyone to be perfectly healthy so they can collect premiums and never pay out.
This is totally untrue. Slow rolling early care to raise total dialysis likelihood was sufficiently widespread. Not the majority of docs but sufficiently large numbers. It is defensible medically to do that because you don’t need to treat something that hasn’t happened yet.
How widespread is "sufficiently"? Especially since you also mention it's a minority? I've not heard of the specific example you mention, do.you have more details?
I feel this is more a societal failing than a medical one. Most people don’t want to take better care of themselves: eating better, portion control, more regular exercise, etc. Too hard.
People want a pill to solve the ailments they have.
People want medication to solve their problems, not actually try and solve things without paying money for it
"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.
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.
Yep this is something that only AI can solve. Same situation applies to education, sales, HR. Human powered bureaucracies and systems suck.
AI would be deployed to behave like the median doctor (at best - or maybe the lowest-common-denominator) to avoid blowing up costs with 99%-likely-to-turn-up-nothing hunts for super-rare conditions.
Today you can try to cajole your human doctor into listening more, or ordering more tests, or considering things you heard online or from acquaintances. AI will be guided to take that into account less because a doctor being more sympathetic and bypassing "standard practice" is an expense caused by humanity that the machine can be trained to avoid.
Today you can go across town and try your luck with another doctor. If it's all AI, you'll just repeat your story to the same basic model and get the same basic dismissal.
The problem arose from trying to make people behave like machines in order to save money. Making a machine behave like a machine ain't gonna help.
You need to shift the goal from "saving money" to "helping people." AI doesn't do that.
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.
> 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".
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.
Any AI will most certainly reflect the biases of the bureaucracies responsible for their creation.
Nah AI can easily be programmed to be much more patient and investigate edge cases and figure out personalized solutions thoroughly and provide bespoke service. This problem would be solved, though of course there are other issues with biases of the bureaucracies.
If you can do that easily, you will have no shortage of investors. But it’s not easy - getting the data alone is a huge problem.
I think OpenAI has plenty of investors...
https://x.com/deedydas/status/1933370776264323164
>Yep this is something that only AI can solve.
[citation needed]
Frontline medicine is all about “just do x” hacks to try to move quicker. We turn people into a fault tree, and enforce that with EMR and audit/review you create a bias to focus on the 80/20 approach. Essentially turning medicine into a helpdesk.
A family member ran into this with a brain tumor, which for a patient presenting with a headache is a 1% likelihood. Slightly elevated blood pressure was the focus in that case. Persistence and a subtle symptom changed triggered the CT scan that ultimately led to the diagnosis about 8 weeks later. Unfortunately with melanoma, 8 weeks is a long time.
Ultimately there’s no right answer. 99% of people with headaches have high blood pressure or other “normal” causes. Sending 1,000 people to CT to identify 5 tumors will cause 50 other complications.
Think of doctors like a helpdesk in a big company. Open a ticket, but work your network to get someone who isn’t dumb to think about it. If you’re too poor or don’t have friends and advocates, your outcome will be no mas.
> Sending 1,000 people to CT to identify 5 tumors will cause 50 other complications.
This is something frequently missing from discussions like this.
Something that has a fairly small per-patient risk like a CT scan, causes far more pain than reduced missed diagnoses would solve if applied across the whole population.
Not only that, but you have red herrings. Going down the rabbit hole chasing random anomalies doesn’t solve the patients problem either!
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.
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.
Are you a woman? Do you take homona birth control other than the "Mini pill"? My wife read online that it's not safe to take typical hormonal birth control on the standard pill if you get migraines with auras, because it increases your risk of stroke and mentioned her migraines to her gyno, who was like "Oh shit yeah we have to put you on the mini pill then." Which was crazy, because aura migraines wasn't on the laundry list of possible conditions on the intake form. Anyway, she got fewer migraines after changing birth control, so...maybe relevant?
I recommend taking probiotic Bacilis Subtilis gummies if you feel a migraine starting, I don't know why it works but it does (and I first heard about Bacilis Subtilis hear on HN.)
That really sucks. It sucks even more that your situation is common to many many women.
One of my best friends faced a similar struggle and took things into her own hands.
Through a lot of trial and error and a lot of studying, she's been able to overcome most endo symptoms and has started her own program where she teaches other women how to do the same.
I'd love to connect you to her if you want!
She's already helped around 30 women with similar struggles. Some have managed to get rid of bloating in a matter of weeks, one even has Crohn's disease and for the first time in 14 years woke up without any stomach pain.
My friend's program isn't a "magic pill" obviously but it sounds like it's worth a shot.
Let me know :)
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!
"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.
Popular understanding, particularly in the United States, is a little behind the scientific opinion on the subject. Most women I've talked to are still under the impression that endometriosis can only be diagnosed by laparoscopy. But there have been improvements in the use of contrast MRI for diagnosis, and as of 2022 the guidelines in Europe recommend MRI as the first option.
https://pmc.ncbi.nlm.nih.gov/articles/PMC9732073/
However, the protocol isn't perfect, and there is probably still room to develop better contrast agents and MR sequences.
>some kind of ignorance of womens' conditions
Some things are just hard. The treatments for benign prostatic hyperplasia suck too. There is no effective reversible pharmaceutical male birth control. Et cetera.
One interesting thing I observed by being trilingual is that different countries’ medical systems will give different and sometimes contradictory instructions when you Google for some medical information.
One of this is sex during menstruation. I was instructed that it was not a problem but in Japan they specifically instruct that it is discouraged because there might be a link with Endometriosis.
If you try to Google if sex in menstruation can lead to infertility you are going to find little information in English, but you are going to find many hits in Japanese.
There are so many more of these. A common one is everything to do with babies.
* In the UK you should not start solids before 6 months, in France you can start at 3, and should at 4.
* Baby bed room temperature: in the UK 16 degrees Celsius, France 19 degrees, in the nordics you should have them sleep outside while I've been told that in Hungary 25 degrees is considered optimal.
Don't underestimate how much of health science is embedded folklore knowledge by people who thought they managed to extract signal from noise with a lot of confounders, especially if the patient is not sick or cannot express their subjective experience.
Also, in the US people have a deathly fear of bedsharing with the baby due to concerns about sudden infant death syndrome (SIDS) and yet bedsharing is common in places like Japan while they also have a much lower infant mortality rate. Apparently, newborns just sleep very poorly lying on their backs alone in cold, hard cribs rather than nuzzling against their moms' breasts. As a result, the common advice in the US has not only led to skyrocketing cases of postpartum depression, but also delayed milestones such as head lifting, plus more cases of plagiocephaly and torticollis.
(that said, as a new dad, I'm also deathly afraid of SIDS so I still stuck by the American recommendations, sleep be darned)
Some of that fear isn’t necessarily unfounded. In America the people are larger and the beds are softer. This creates a larger, deeper divot around the adult for the baby to roll in to and suffocate.
Most of the American parents I know practiced bed-sharing including myself. But we would also answer "no" when asked about at the doctor's office because that's the "right" answer. So... I am skeptical about any negative statistics on bedsharing. We're not obese and don't drink or do drugs. That probably mitigates a huge amount of associated risk.
If you ask around among other parents you’re going to find that bed sharing is a lot more common than the medical community wants it to be. We had a lot of reasons for doing it and so did many of our friends.
If I recall correctly, there was some recent research connecting the cholinergic system to SIDS, pointing at possible changes in practices to reduce the risk.
I've come to think the American norm is something of a self-fulfilling prophecy. Bedsharing becomes dangerous mostly when the parents fall asleep intoxicated. You might have noticed that you're much more likely to wake up with your arm partially numb if you pass out drunk than if you go to sleep sober. But because bed sharing is discouraged, it's mostly less responsible parents who do it, which creates a stronger apparent correlation with infant suffocation.
And not just alcohol. America is highly medicated. Someone who takes sleeping pills for example is unlikely to be subconsciously aware of their surroundings.
My favourites are
- How much alcohol can a pregnant person drink? (Not too much, obviously, but is a glass of wine a couple of different days in the third trimester okay? Probably, but it varies a lot deoending on which country you're in.)
- When can children start eating green leaves? (I don't know, but even different counties in Sweden have different guidelines on that one.)
- Should infants sleep on their tummy or back? (Definitely on their back. There is no argument there. But when I was an infant -- which is not that long ago, parents were advised otherwise.)
> How much alcohol can a pregnant person drink? (Not too much, obviously, but is a glass of wine a couple of different days in the third trimester okay? Probably, but it varies a lot deoending on which country you're in.)
It's important to differentiate a low individual risk for you, vs what that means to a whole population.
You will easily find someone willing to say "oh I had two glasses of wine a week while pregnant and my kid was fine".
If everyone started drinking 2 glasses of wine a week in the third trimester, FAS rates will increase, and mean IQ score will dip. Will they dip by a lot? Probably not, but definitely not zero. So of course anyone in a position to make a society-wide recommendation, recommends "no alcohol".
Individual parents may look at data and say, that's a risk they're willing to take.
> But when I was an infant -- which is not that long ago, parents were advised otherwise.
So...research was done and people learned they were wrong?
I'm not quite following what you think the takeaway was here?
The "Back to Sleep" campaigns saw something like a 50% decrease in infant mortality within 12 months in the UK. It isn't really comparable to "fad diet of the year" medical advice.
For sleeping on their back. Our youngest daughter would not sleep on her back. She still sleeps on her tummy with arms folded under her. The only way she sleeps otherwise is in the car seat when properly exhausted. Put her to bed and she will turn around and fall asleep. So what does medicine say then?
Sleeping on the back only matters when they are very young. It’s for when they don’t have the strength to turn themselves out of a face-down / suffocating position. That’s why you practice tummy time (neck/head lifting) with an infant. Once they are older they can sleep how they like
Depends on the kid too. All 3 of my kids could lift their head up when they were born. A couple of times I forgot all babies aren't like that and picked up a friend's baby without adequate support.
It says that there is like a 10x risk of SIDS in the first four months of life with tummy sleeping.
I don't agree with her on everything, but Emily Oster's chapter on SIDS (in the second book I think, Cribsheet) I think does a good job outlining the data on it. And my brother just had a kid who also would absolutely not sleep on his back. Once he could roll he just sleeps on his tummy (but once they can roll SIDS is not really an issue)
What I was taught is that one should not put them down on their tummy, but if they're able to flip themselves over when put on their back they're no longer so likely to die from it.
> But when I was an infant -- which is not that long ago, parents were advised otherwise
Medicine is wild. Lots of things that were taken as gospel even 15 years ago have been completely flipped on their head. The NHS massively changed their advice last year on asthma treatment and it’s basically the opposite of what they said before. We’ve seen the same with musculoskeletal injuries, nerve injuries and just general recovery.
Sorry, but what was the change? Adding corticoid inhalers when treating an asthma episode? Curious since I have asthma and didn’t hear about this change yet.
The short of it was that they decided salbutamol was overprescribed and shouldn’t be given to anyone who isn’t taking a corticosteroid inhaler at the same time. The advice has changed from “if you feel like you need your blue inhaler take it” to “your asthma should be managed by your corticosteroid dose, and if it’s not you should adjust”. Obviously not suitable for everyone but for people like my dad it got him from using his reliever once a week to not having an active prescription for it anymore.
That was a worldwide change after they figured out long acting beta agonists were basically killing people because they don’t treat the underlying inflammation like inhaled corticosteroids do.
Yeah that doesn’t surprise me - I just don’t have enough knowledge of outside the UK to know if it was advised elsewhere. Anecdotally, my breathing is so much better since I’ve adjusted to the correct dose and never missing one, I’ve gone from needing a reliever with me at all times to not using it once in a year.
Shit I should talk to my doctor again. Although probably for exercises induced things might be a little different.
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?
Humans can thrive in nonideal situations. I would say too ideal is unhealthy.
Plus the effect might be small or something easily adapted to.
Well, hot places do tend to have indolent populations.
Another example is Ureaplasma Parvum which is treated as a serious STD in parts of the world but almost never acknowledged as an STD in the U.S. and therefore almost impossible to get tested for and treated for in the U.S. There’s an entire reddit about it: https://www.reddit.com/r/Ureaplasma/
Full background: https://www.reddit.com/r/Ureaplasma/comments/qavqf1/the_urea...
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?
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
There's been conflicting information about this over the years. The latest research suggests that it may increase cancer risk when combined with other behaviors that themselves increase risk, but it probably has little to no effect on its own.
https://www.mskcc.org/news/burning-issue-truth-about-hot-dri...
Heard this in France too from MD. Link between drinking too hot (over 60°C) and oesophagus cancer
The "hot drinks cause cancer" thing is surprisingly legit
Makes you realize how much of what we think is "settled science" is often just what gets repeated in a given language or culture
Yup, pregnancy/childbirth/rearing is particularly rife with these. Western sources suggest that eating sushi while pregnant is little short of stabbing yourself in the abdomen with a sharp knife, Japanese sources explicitly recommend sushi as a light and healthy meal. In the US giving any form of peanuts to babies is attempted murder, in Israel peanut puffs (Bamba) are among the first foods offered.
> In the US giving any form of peanuts to babies is attempted murder, in Israel peanut puffs (Bamba) are among the first foods offered.
This is not the case, peanut puffs are a common early solid food in the US. Before that there are allergen mixes you can add to milk/formula.
All the recommendations I saw when my kid was born said early exposure to allergens is good to reduce chances of allergic reactions.
Do you mind sharing a promising article in Japanese which can be translated?
I just took the first link from a Google search that looked not to be advertisement (edit: but still kinda is)
https://emishia-clinic.jp/low-dose-pill/on-my-period-sex/
This makes me wonder how to search for content in another language? I mean most sites are almost trivially translatable by now.
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.)
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.
To help support the "retrograde menses is incomplete" discussion; I was involved in a case where a woman had a bone marrow transplant for her CML. She later developed "appendicitis" when but when the tissue sample came to the pathologist, the appendicitis was actually endometriosis. Even more, the endometriosis was XY karyotype, ie derived from the bone marrow transplant. We wrote up a case report.
NB - It is a known phenomena in bone marrow transplant recipients that the donor DNA can be taken up by host cells by unknown mechanisms, so it isn't a guarantee that the endometriosis was developed from the transplanted bone marrow.
It's one thing to know, in theory, that stem cells can end up in strange places after transplantation, but to see that play out in something as enigmatic as endometriosis really underlines how little we know about the underlying mechanisms.
It was surprising to me when I saw the cells under the scope when I expected appendicitis! The karyotype was just for fun, but the XY testing was quite unexpected.
My girlfriend has endometriosis, I hadn't really read much about it until now, thank you for writing!
I think this is a story too common in women's healthcare.
It's often massively underfunded and underesearched, another symptom of the fact our society had not let women into STEM/politics for decades, and continues to erect barriers to encourage them not too.
I like the fact you spelled out the incentives for PhDs to do so at the end ;). Would be great!
>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.
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
The article sort of glosses over a major distinction regarding the surgical approach to endometriosis -- 90+% of OB/GYNs are trained to ablate (burn-to-destroy) the affected tissue, whereas more recently, a crop of surgeons have begun to specialize in excising a wide area of tissue surrounding the affected tissue. Many times, the tissue to destroy is not on the surface - it is deeply infiltrating what it has adhered to. Burning it is just like cutting grass, it'll come right back. Success rates with excisional surgery are markedly better, but not a silver bullet.
Not to mention the burning creates a lot more scar tissue, which greatly impacts future reproductive prospects depending on where the burning is taking place…
Considering the magic of birth and the war in the womb[0] it's amazing that the reproductive system works as well as it does.
Pregnancy relieves the symptoms but is not a cure. But surely you'd have to consider lower fertility has something to do with the increase in endometriosis.
[0] https://aeon.co/essays/why-pregnancy-is-a-biological-war-bet...
> 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.
>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.
> 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.
According to my wife’s surgeon (she had endometriosis removed in 2008) there is some belief that the condition can actually cause the womb to become less hospitable to egg development, i.e. the fluids en utero actually weaken the health of the eggs.
The uterus is not the only thing involved in infertility. More generally, endometriosis probably affects fertility in multiple different ways, and a woman with endometriosis and fertility issues may never know what her specific problem is.
On the plus side, IVF works pretty well for many women with endometriosis. IVF patients with endo have only somewhat worse stats than other IVF patients.
It's less about scarring inside the uterus, and more about chaos in the neighborhood
You don't understand why uterine cells screwing up the fallopian tubes or ovaries would cause infertility?
I heard about this disease through an education channel.
https://www.youtube.com/watch?v=KzA9VATcZhY
> The speaker had been experiencing symptoms like period pain, bloating, and fatigue for years, visiting many doctors without getting a proper diagnosis. When severe pain developed, a GP ordered an ultrasound but the speaker initially ignored the results, assuming it was just an ovarian cyst. However, after using the Ada AI medical diagnosis app, which asked questions about symptoms and calculated probabilities of various conditions, it suggested endometriosis - a condition the speaker had never heard of. This prompted them to return to their doctor, where the ultrasound results confirmed the AI's diagnosis of endometriosis.
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.
The article mentions it. If you bailed before that point, you bailed just before it got really good.
The comparison to cancer is honestly kind of chilling. The fact that endometriosis lesions pick up the same mutations, adapt to evade the immune system, and yet are considered "benign" is such a medical blind spot
There are probably other pluripotent cell types that do the exact same thing, but just don't get detected since very few cell types slough off with a hormonal cycle.
There are probably many more instances of this disease in men that never get triggered and discovered due to atypical hormonal levels being required.
Our bodies are weird systems.
So, why don't cancer treatments work here? Or would they likely work here but they largely haven't been tried yet? (See also codetweep's comment about surgery.)
Endometriosisis is 'benign' in the self-contained sense only. I would imagine that changes the target profile. I don't think there is are any rigid 'out of scope' policing drugs or biological mechanisms for that. As opposed to cancerous malformed biomarkers which scream "I shouldn't exist!" to the immune system.
I doubt chemotherapy drugs have a favorable risk/benefit ratio. The original article notes that somatic DNA changes might be involved, so perhaps immunotherapy might be useful. Interestingly this is being studied [1].
1. https://pmc.ncbi.nlm.nih.gov/articles/PMC10150018/
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.
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.
Sounds like you need to start going to a different hospital.
Just wait til you find out men can get it (extremely rare)
This is in the article!
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!
“endometriosis is also found in men with a total of 16 cases previously reported in the literature”
I don’t think this is enough to affect funding.
Nope. Read the article! It's good.
https://pmc.ncbi.nlm.nih.gov/articles/PMC5833878/
Is that with or without hormone treatment?
There is a strong correlation with hormones. It’s in the post.
Thanks I wanted to see the commenters perspective and if they have different information or opinions.
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.
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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.
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.)
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.
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.
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.
>> 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.
On other areas it's the other way around, breast cancer gets a lot of attention while prostate cancer gets less.
>> 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.
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"
I agree. It is time for men activists to vote for parties that put more money in fixing homelessness and mental health.
Oh there are various disbalances at work. Maladies that affect the poor are underfunded as well.
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".
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.
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> I don’t think women get to keep playing victim while receiving equal treatment
Please don't comment like this on HN, no matter what you're replying to. It's not what HN is for and it destroys what it is for.
https://news.ycombinator.com/newsguidelines.html
The reason why breast cancer became a cause celebre is that it really was a taboo disease that couldn't be talked about. Cancer generally, but breast cancer even more. There was a time when "awareness" really was important because people were not aware.
That progress has happened with it doesn't mean much to things like endometriosis, which has a mean time to diagnosis of ~a decade, a point made in TFA. People commonly suffer undiagnosed with it for ten years due to a collective failure. Finding a cure might be very difficult, but fairly rapid diagnosis really shouldn't be, it's not like Alzheimer's.
The numbers presented are stark: "Yet, it stands almost entirely alone in terms of how little funding the condition receives relative to the absolute number of lives it irrevocably alters for the worse: 10% of women (or 190 million) worldwide, with only $29M earmarked for them."
That's really bad. Like, really bad. It's not surprising that women might get very mad about this state of affairs.
The individual suffering from it probably shouldn't be lumped into some macro-social group of people who are 'playing victim while receiving equal treatment'. They're a person suffering from an extremely painful condition by no fault of their own. It could be your mom, your sister, partner, friend. How much money is raised for breast cancer makes no difference for their circumstance.
What's worse is that there are countless stories of women being denied care and treatment for this condition. It goes undiagnosed for years. Yet it's known to be debilitating in some cases. That's outside the bounds of normalcy and isn't made any better by hypothetical equal treatment.
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I pity you for having to wake up every morning with such hate in your mind. I also hope you never have to experience a loved one - e.g. a mother, sister, or wife, go through the pains of a disease like breast cancer, endometriosis, ovarian cancer, etc.
And if you do, I hope for those around you, that you never say such an awful thing to them.
> I pity you for having to wake up every morning with such hate in your mind
Please don't comment like this on HN, no matter what you're replying to. It's not what HN is for and it destroys what it is for.
https://news.ycombinator.com/newsguidelines.html
There's no question that diseases like endometriosis and breast cancer needs to go. The medical research community is very self-critical about anti-female biases and there are numerous papers and articles about it. And that's good. If endometriosis is not getting the attention it deserves, then push for it by all means. Men don't really understand it for obvious reasons. But it isn't a big task to get their support by creating awareness. Articles like this is a step in that direction.
But can we please avoid dragging men through the mud in matters they have no awareness or influence on? Why must a top-level comment about endometriosis, a disease that affects only women, implicate men in anyway? What makes you feel that men are fine with watching their female kin (or any women) suffer from any of those? Why would men like me even be reading this article if we aren't open to the experience of the others? Let's consider the fact that prostrate and testicular cancers don't receive anywhere near as much attention as breast and ovarian cancer. So the top comment is rhetorical and objectively false. Imagine if a man you know gets prostrate cancer and someone comments that there would be better treatment for it affected women too. How would you feel?
I hate saying this here on the comment section about an important medical condition. Can we discuss women's issues objectively without looking for ways to blame men somehow? Why such hostility against men? I see this far too often and on far too many random topics - it's disheartening and depressing. Look at the way the discussion thread progressed. The top comment that mentions men unfavorably and unreasonably is upvoted and defended, while the opposing views are passionately argued against and even flagged. This is actually a recurring and unhealthy pattern on HN. Expressing male perspective is an easy way to get flagged - even if no hostility is intended (mods please note). Is this how we're going to achieve awareness on gender-specific issues and gender parity?
Where in my comment do I even mention men? I was responding to a hateful comment from a person, not an entire gender.
Also, I guess I didn’t state my gender anywhere (I did not think it would be so relevant! Apologies for not realizing this), but I am a man. So I guess I expressed a “male perspective”. Hopefully that brings some joy to your day.
Sarcasm aside, I do think there may be some misunderstanding about how funding and advertising works for disease research. I am by no means an expert, but have found myself deeply embedded in this area for a while.
I’d be happy to talk with you more about these issues, if you’d like to drop a way for me to get in touch with you on signal, matrix, email or phone.
I'm not talking about your single comment. The entire problem here is the top comment and the peculiar responses to it. Many of your objections apply to that top level comment too. Yet you chose to reply only to people who objected to that.
Now, I did consider the possibility that you are not a woman. But that doesn't change the outcome, and neither does your sarcasm. People showing biases against their own kind is not unusual and that doesn't provide the missing justification. People sometimes aim for the easiest target and sometimes it's their own kind. Men showing bias against men is still bias and it's still not justified. Your 'male perspective' hardly invalidates those of the others.
And no, I don't want to discuss anything in private since it's hard for others to see the bias or point out any issues. And I don't agree with your argument on funding and advertising, since I have been at the receiving end of it in an extreme manner. You can quote as much technicality as you want, but that doesn't invalidate the fact that prejudices cause harm. Unfortunately, the modern society is oblivious of the boundary between empowerment and prejudice. I'm not against women in anyway and I sincerely wish for their well being too. All those problems can be solved cooperatively and without this hostility and the us-vs-them mentality. Instead, this sort of negative reinforcement will only splinter and harm the society in the long run. Reverse of sexism is still sexism, and it achieves nothing.
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I advise people to at least consider the “years of life lost” approach to thinking about this [0]
Prostate cancer and breast cancer suck. All cancer sucks, it’s a blight on civilization.
Don’t pit diseases against each other like that. They’re not sports teams.
[0] https://pmc.ncbi.nlm.nih.gov/articles/PMC10279998/
And yet you chose to reply to this comment instead of the parent :)
CW is a thing, cant's wish it away. Best to work on rules of engagement and being at least slightly productive about it. Small steps like https://www.astralcodexten.com/p/but-vs-yes-but. Seems trivial, but I'd love to see more informal rules like this enforced in practice.
I’m sure I don’t understand what you’re saying! Could you explain? I’m not being facetious, either. I’m not sure how posting this to the parent would have made any sense.
The money is not infinite in any sense so it is for many pragmatic purposes a competition, the diseases with more attention get more research, so it's in the reasonable interests of the people to advocate for the diseases that are most likely to affect them personally.
For sure. I would like to point out for readers to think about the fact that if you are, say, a guy in your 30s, the women close to you getting breast cancer will also have a profound impact on your life. Likely a greater one than dying of prostate cancer in your 80s.
Maybe (hopefully) neither of those happen! Maybe you get prostate cancer in your 30s! I just hope one can realize that getting the disease oneself is not the only way the disease can affect them, far from it.
From what I understand, while in these two topics it is true that gender disparity sways towards women, in others it tends to sway the other way.
[0] https://www.theguardian.com/education/2019/dec/18/women-have...
[1] https://pubmed.ncbi.nlm.nih.gov/33232627/#:~:text=NIH%20dise...
I think this topic is better discussed without displays of victimhood anyhow (or maybe all topics are).
Breast cancer affects men too.
According to the American Cancer Society, it is estimated that there will be over 62,000 more cases of breast cancer than prostate cancer in the US this year, and will kill over 6000 more people.
>The American Cancer Society’s estimates for prostate cancer in the United States for 2025 are:
>About 313,780 new cases of prostate cancer
>About 35,770 deaths from prostate cancer
https://www.cancer.org/cancer/types/prostate-cancer/about/ke...
>The American Cancer Society's estimates for breast cancer in the United States for 2025 are:
>About 316,950 new cases of invasive breast cancer will be diagnosed in women.
>About 59,080 new cases of ductal carcinoma in situ (DCIS) will be diagnosed.
>About 42,170 women will die from breast cancer.
https://www.cancer.org/cancer/types/breast-cancer/about/how-...
there are more women than men. It's not 50/50 but 50.5 / 49.5, because women live longer.
that 0.5% over 340M Americans represents 1.7M women, which makes me think that you can't do math like that?
So, by your math, there is equal effort for both then? So this entire conversation is pointless?
Looking through these three graphs, there's more to it than that.
Breast cancer mortality by age: https://www.cancerresearchuk.org/health-professional/cancer-...
Prostate cancer mortality by age: https://www.cancerresearchuk.org/health-professional/cancer-...
Testicular cancer mortality by age: https://www.cancerresearchuk.org/health-professional/cancer-...
It ain’t a competition lmaooo
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Many doctors just prescribe birth control pills as treatment for endometriosis and call it a day.
So much for it being an interesting disease.
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