The New York Times used to run a series of medical case studies in their magazine, and over and over again the story was essentially that the patient sought care from primary care and specialists, without success, and were generally miserable, until a miraculous event happened, like a friend's aunt knowing someone at Johns Hopkins, and that doctor having the time to think about it. The problem was incredibly evident for female patients.

I don't know whether this is a result of doctors being burned out by the system that they work in, a certain doctorial arrogance that diminishes their listening skills, over-reliance on heuristic diagnoses, some kind of ignorance of womens' conditions, or even a kind of medical misogyny. But it pushes people pretty quickly towards Dr Google and sometimes, sadly, into quackery, and that can't be a good thing.

The cause is pretty easy. Patients aren't treated like mysteries, they're treated like BAU Jira tickets - just get it done so you're on to the next one. The system is built to handle the 90%. If you fall into that other 10%, it won't work well for you. If you have provider companies and insurances pressing you to hit some metric, that's what you have to do. If you are concerned about malpractice, then you have to just read from the Epic system. No surprise we're in this situation.

We need more doctors. The nation has grown, our medical professionals and courts must scale up. Automation isn't going to solve everything.

Yes, unfortunately we've made doctors the gatekeepers and they don't want more doctors because that will eat into their income. This happens with every single licensed occupation where the license body is run by members of the occupation, with the possible exception of bar associations.

My theory on that one is that the more lawyers you have in society the more lawyers you need because lawyers do a great job creating work for one another (both through litigation but also through legal documentation which needs to be read and interpreted by other lawyers).

Imagine if asking a specialist the time meant they had 3 broken clocks on the wall and picked one.

That’s pretty much how initial medical diagnoses are done.

Insurance companies then limit what’s types of care/investigation can be done for various conditions.

Doctor may know that medicine X will work best but insurance demands that Y and Z be first tried before covering X. Same with tests.

I’m tired of it.

What’s with the stupid “here’s the cost” bill you get, followed by the insurance company just, like, deciding things are a different price? What’s with the unreasonably stupid “out of network” medical charges? What’s with the fact that you can walk into a pharmacy and request a discount, but they can’t tell you about it once the transaction has been rung up?

There are SO MANY stupid rules in this system, I literally cannot imagine a system with more low-hanging fruit.

It isn’t that it’s easy to do all a doctor does. But their training and knowledge shines in the 99th percentile case except they never exercise it there so you can usually get there with Google.

“Oh but an LLM will guess the common case and never think of the rare!”

Yeah but so will a doctor given 10 minutes on it. They’re not exactly going to House MD you. You’re gonna die.

(Bone tuberculosis)

Which project did you use?

https://github.com/OpenHealthForAll/open-health

But I understand what you're saying. Insurance gates these but could do so with their own tech rather than relying on the third party. Could help with keeping loss ratios at the minimum.

I work in insurance. In my experience, the fact that you have to go to the doctor for a referral discourages people from getting said referral.

So the tradeoff is that you would get fewer referral-specific visits (i.e. person going to their GP to get a specialist referral) at the likely expense of more specialist visits.

I have no idea what good GPs serve besides flu testing. Sounds unfair but they generally seem uninformed about pretty common medical conditions.

I can get into local dermatologists without problem. But an endocrinologist takes a referral (because there are so few, and they’re all fully booked).

I've seen a lot of doctors who insist patients must be making up things when they say "but XYZ", and my question becomes...so what?

If someone credibly lies to you and gets codeine or ritalin or something once or twice...that's not really significant, in terms of negative outcomes.

If someone lies to reach a medical professional, then you treat them like any other bad customer interaction and stop doing business with them after some point.

Today you can try to cajole your human doctor into listening more, or ordering more tests, or considering things you heard online or from acquaintances. AI will be guided to take that into account less because a doctor being more sympathetic and bypassing "standard practice" is an expense caused by humanity that the machine can be trained to avoid.

Today you can go across town and try your luck with another doctor. If it's all AI, you'll just repeat your story to the same basic model and get the same basic dismissal.

The problem arose from trying to make people behave like machines in order to save money. Making a machine behave like a machine ain't gonna help.

You need to shift the goal from "saving money" to "helping people." AI doesn't do that.

https://x.com/deedydas/status/1933370776264323164

In the absence of such a thing OpenAI is already quite good, some theoretical perfect shouldn't be trotted out as a counter if it doesn't actually exist.

LLMs already work fantastically with pretty good UX.

A family member ran into this with a brain tumor, which for a patient presenting with a headache is a 1% likelihood. Slightly elevated blood pressure was the focus in that case. Persistence and a subtle symptom changed triggered the CT scan that ultimately led to the diagnosis about 8 weeks later. Unfortunately with melanoma, 8 weeks is a long time.

Ultimately there’s no right answer. 99% of people with headaches have high blood pressure or other “normal” causes. Sending 1,000 people to CT to identify 5 tumors will cause 50 other complications.

Think of doctors like a helpdesk in a big company. Open a ticket, but work your network to get someone who isn’t dumb to think about it. If you’re too poor or don’t have friends and advocates, your outcome will be no mas.

This is something frequently missing from discussions like this.

Something that has a fairly small per-patient risk like a CT scan, causes far more pain than reduced missed diagnoses would solve if applied across the whole population.

asking as someone that had it

CT scans are super valuable for all sorts of things, and the radiation dose/risk for an individual is small, but at a societal level using them freely as a "might as well" kind of test results in a lot of excess radiation exposure. This recent research suggests up to 5% of cancer diagnoses each year could be from CT scan radiation: https://www.ucsf.edu/news/2025/04/429791/popular-ct-scans-co...

The "incidental findings" side is an interesting dilemma: CT scans often reveal other stuff beyond what they were initially ordered for, but which can't be identified solely by the CT scan itself. So, if something looks a little weird on the CT scan it creates an imperative to figure out what it is, so there are additional tests, each of which carries its own risks and also consumes limited resources that might otherwise have been used for people with more definitively concerning findings. https://en.wikipedia.org/wiki/Incidental_imaging_finding

The reason the “family member or friend who knows someone who can recommend a doctor” seems to work well, in my experience, is because that doctor then has some motivation to actually care, as the patient is connected to someone they already know and care about.

Our medical system financially incentivizes doctors to see as many patients as possible, but doesn’t financially incentivize actually making them better. For that, the system just hopes that doctors will care, without giving them the room to do so.

We have progressed fantastically on the common medical conditions, but once you get into more rare stuff it gets a lot harder. Doctors have huge breadth of knowledge, but the sum of human medical knowledge could never fit into a human brain, even within a specialty, and even then there's so much we are not even close to understanding or knowing.

And for rarer stuff that is just getting discovered and learned about, there will only be a few specialists who are the ones figuring it out. That's why you go to lots of doctors that offer nothing, then a hint directs you to the doctors that are in the cutting edge of expanding knowledge.

Even if we financially incentivized each and every doctor to spend hours or days trying to find out what's going on with a patient that the doctor can't help with their current knowledge, it's quite likely that doctor could never help on the basis of a single patient. Medicine advances through discovery in groups of people and transferring knowledge from the results of one patient to others, incrementally. A single patient is far less likely to lead to advancement than a doctor having a group of people with similar symptoms.

The financial incentive for this discovery comes from research hospitals that collect these difficult cases, and obtain federal research grants from the National Institute of Health that allows them to do research and publish papers and share the knowledge. The proposed budget for the US drastically slashes this, greatly reducing our ability to advance medicine. And in advance of the budget cuts, the NIH is in violation of current contracts stopping payment, resulting in massive waste as research dies on the vine.

So what I'm trying to say is that the logistics of advancing medicine require grouping patients, and the place where that happens is at research hospitals, not at the local community doctor for everyday care. And our society is choosing, consciously or unconsciously, to drastically reduce access to that type of care.

At about 10% of women of reproductive age, endometriosis is way over on the “common medical conditions” side, not the “more rare stuff” side.

There's a bias here, but its not about how common the disease is, but who it affects and how.

This worldview requires believing that doctors dgaf about their family members.

My general impression from half recalling whatever stories about new medical discoveries, is that the motivation is more often a problem that a family member of the researcher has rather than a problem that the researcher personally has.

Endometriosis is not rare. But it's a female disease. You will be shocked to know how many of diseases that women have to deal with are both quite common (some estimate up to 10% of women may have it), and completely ignored by medical community (which is still overwhelmingly male)

I get a tingle in my balls? Here's an expedited ultrasound that we can do tomorrow. We can get you in for a blood test for cancer markers in two days.

My whole pelvis hurts when I have my period? Here's a motrin and an ibuprofen. Come back if it doesn't stop bleeding after a few days.

Like an effervescent abscess, the difference in treatment between males and females remains to this day. It's not even particularly hard to find female doctors that will outright dismiss symptoms in female patients because that's what they were taught.

White[1] males are extremely over represented in medical literature and research. And I'm saying it as a white male myself.

[1] This actually has ramifications beyond just gender. See e.g. https://www.statnews.com/2020/07/21/dermatology-faces-reckon...

The article shows that 10% is a low estimate.

It is not completely ignored, but research is underfunded nearly to the degree that COPD is underfunded.

I think we need to distinguish two things here too: the bedside manner of doctors and whether they are willing to present the options that could lead to diagnosis, and then the amount of medical research that could give doctors some tools to better manage endometriosis.

Edit: https://www.uchicagomedicine.org/forefront/news/2023/august/...

It's hard not to be incredibly cynical in the face of things like this. Way more than once have I thought "this is a cruel and unusual punishment" -- wait aren't those prohibited?? Oh right we get around that by making cruelty usual.

The number of doctors and nurses that attempt to keep people chronically ill rather than curing them if possible, is essentially zero. People get into that field frequently because they actually care, and people that actually care are the most likely to not follow a vague profit incentive that actively hurts people.

Similarly, most medical researchers would love to cure diseases, and actively seek out jobs where they do so and will object if asked to suppress curative research.

To the extent that what you describe exists, it is limited to MBA people at insurance companies and big pharma determining what gets funded for research. While exceptions always exist, the incidence of that attitude among the people actually doing the work is very close to nil.

Sorry to annoy you.

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.

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.

That's not actually a thing. A very high portion of premiums always has to be paid out. Not just because the regulators said so (IIRC the requirement is a 90% or 95% loss ratio?), but because they'd be undercut by a competitor long before they got in regulatory trouble.

People want a pill to solve the ailments they have.

Most chronic diseases are primarily caused by lifestyle choices. This is largely outside the scope of medical practice. A doctor can prescribe metformin to treat type-2 diabetes and a statin to reduce cholesterol but they can't force you to clean up your diet and get some exercise.

https://peterattiamd.com/outlive/

The path to figuring it can be long and sometimes improbably. For example, somebody I know was watching a youtube channel they like, and one of the creators put out a side-video about a short informational cartoon they made about their own journey discovering they had endometriosis -- which also echoed this same diagnostic pattern.

My friend saw something in the cartoon that seemed familiar, decided to go get a biopsy, and voila - a lifetime of pain was finally answered. She was in her late 40s, and decided to just go get surgery and now a few years and a hysterectomy later lives pain free.

I spent over a year going through the Canadian healthcare system, seeing different doctors. Most either brushed me off or implied it was all in my head and normal exercise would fix it (I am fairly active and have a healthy BMI). Even the few who took me seriously refused to run further tests or offer any treatment.

Eventually, I gave up and saw a private urologist. He looked at my results, immediately ordered more tests, and it was obvious from the new data what was going on. He prescribed HCG, and within a month I felt like a different person. Symptoms gone, T levels back in range.

Really wish more doctors took the time to actually listen, especially when a patient clearly isn’t doing well despite "normal" labs.

To the first PT, the only signal they have is that I didn't come back. If their assumption is it was because I got cured, they will probably give the same wrong diagnosis the next time someone shows up with the same symptoms.

Every couple of years, I get renewed energy to try the search again. It lasts for a year or two before I run out of steam, give up, and decide to live with it, because I'm easily 6 figures into trying to be able to walk without pain and not be laid out with a headache every month.

100% of doctors started with telling me the problem was my weight. I lost 50 lbs and all my symptoms got worse, so they pivoted to telling me it's psychogenic. All of them. But I've been through all the recommended types of psych treatment too, and a few experimental ones besides.

In point of fact, I cannot convince anybody who might know to care enough to find out, and it seems unlikely I ever will. There doesn't seem to be any good reason I should be stuck with these pains, but there are only so many times I'm willing to try the same things, expecting different results, because this doctor thinks all the other ones must have been too stupid to rule out the obvious causes.

I do know some people see an improvement on migraines even on traditional BC, but the hierarchy is pretty much: nothing < traditional BC < mini-pills.

One of my best friends faced a similar struggle and took things into her own hands.

Through a lot of trial and error and a lot of studying, she's been able to overcome most endo symptoms and has started her own program where she teaches other women how to do the same.

I'd love to connect you to her if you want!

She's already helped around 30 women with similar struggles. Some have managed to get rid of bloating in a matter of weeks, one even has Crohn's disease and for the first time in 14 years woke up without any stomach pain.

My friend's program isn't a "magic pill" obviously but it sounds like it's worth a shot.

Let me know :)

The N-Acetyl Cysteine Protocol Morning and Evening: 600mg NAC Oregano Oil (min. 40mg Carvacrol) Black Seed Oil (1 teaspoon)

For the natural oils, my strategy is to mix 235ml Nature's Way Black Seed Oil with 30ml Natural Factors Oil of Oregano, take one teaspoon morning and evening. This mix delivers the prescribed amount of carvacrol per teaspoon. Most of my problems were with the upper respiratory tract and taking it orally this way coats the throat well.

The other intervention that had big effect on my health in the last few years was adding a daily mineral supplement. I'm an avid tea drinker and it turns out that can interfere with your absorption of minerals, plus with the nutrition crisis it is not clear if our produce even has enough for optimal health. I simply take the maximum recommended supplementary dose of Mg, Ca and Zn.

Also, check your Vitamin D levels if you haven't. If you have been dealing with this for 12 years, I assume you have already ruled that out, but I'm mentioning it for completeness. Good luck.

P.S. One last thing to mention - try the carnivore diet for a bit (if you haven't, of course). I know people who have found it a big help, but then again for some it didn't do anything. Give it a month, see how it goes, obviously stop immediately if you get serious symptoms.

“Happy families are all alike; every unhappy family is unhappy in its own way".

To sum it up, not much to write about ones that went to primary care and were handled properly.

We just took it for good money ans she is treated since with reasonable results. But it may be something else.

I wonder if there are better tests today.

https://pmc.ncbi.nlm.nih.gov/articles/PMC9732073/

However, the protocol isn't perfect, and there is probably still room to develop better contrast agents and MR sequences.

>some kind of ignorance of womens' conditions

Some things are just hard. The treatments for benign prostatic hyperplasia suck too. There is no effective reversible pharmaceutical male birth control. Et cetera.

99 times out a 100, if the doctor thinks it's something else, it's not.

So when someone comes in who doesn't fit that mold, they get shuttled around to a bunch of doctors until it gets bad enough someone is forced to think outside the box.

Not all Endo suffers get that bad. But there's just no way of knowing if you're going to be one of the unlucky ones.

For QOL if you diagnosed, make some plans. If you want kids ever then make that your top priority, because it can effect fertility, and being pregnant can help.

Even when its seems like its gone, it might come back.

If your country doesn't have free public health insurance, get it and get good coverage, you don't want to be left hanging here.

The operations can really help for a time, but it depends on how good the surgeon is. Find a good one that listens to you.

Endo can gum up things and the scar tissue from ops can gum up your insides, and its a real messy treatment(laser ablation). Ovaries can get calcified etc.

If it gets bad bad - and you'll know what I'm talking about if it happens to you or someone you care about- do not put off getting a hysterectomy. There is no point in suffering in pain month after month and not having a life. If I had to do the last twenty years over again I would have counselled her to get the hysterectomy when she couldn't walk down the stairs without pain, after multiple hormone treatments and ops.

One of this is sex during menstruation. I was instructed that it was not a problem but in Japan they specifically instruct that it is discouraged because there might be a link with Endometriosis.

If you try to Google if sex in menstruation can lead to infertility you are going to find little information in English, but you are going to find many hits in Japanese.

* In the UK you should not start solids before 6 months, in France you can start at 3, and should at 4.

* Baby bed room temperature: in the UK 16 degrees Celsius, France 19 degrees, in the nordics you should have them sleep outside while I've been told that in Hungary 25 degrees is considered optimal.

Don't underestimate how much of health science is embedded folklore knowledge by people who thought they managed to extract signal from noise with a lot of confounders, especially if the patient is not sick or cannot express their subjective experience.

(that said, as a new dad, I'm also deathly afraid of SIDS so I still stuck by the American recommendations, sleep be darned)

If you are overweight, sleep on a standard western style mattress, have any sleep disorders, smoke, drink, use illegal drugs, or even some prescription medications, you are much more likely to smother your infant.

The risk of all sleep related causes of death is around 1/1000 in the US, but you can reduce that risk 100x if you follow all of the safe sleeping recommendations.

1/1000 is pretty low but it’s higher than the chance of your infant dying in a car accident, disease, or any other cause of death for full term healthy babies.

My wife (pediatric ER doctor) has had to declare numerous babies dead from a parent rolling over and suffocating their infant and usually the parents weren’t intoxicated at the time.

I have 2 kids (and a 3rd on the way). I know how hard it is to follow all the safe sleeping recommendations, but the risk is real and the cost is so high.

Now the default discourages bedsharing, but we know and can witness personally the many positive effects. The warning causes us to be more conscientious about doing it if we choose to, and for those who default to obeisance they are in their minds making the responsible choice.

Because of the social stigma, those who do bedsharing responsibly are not being accurately reflected in the data, causing only those careless enough to admit it to be captured.

- How much alcohol can a pregnant person drink? (Not too much, obviously, but is a glass of wine a couple of different days in the third trimester okay? Probably, but it varies a lot deoending on which country you're in.)

- When can children start eating green leaves? (I don't know, but even different counties in Sweden have different guidelines on that one.)

- Should infants sleep on their tummy or back? (Definitely on their back. There is no argument there. But when I was an infant -- which is not that long ago, parents were advised otherwise.)

It's important to differentiate a low individual risk for you, vs what that means to a whole population.

You will easily find someone willing to say "oh I had two glasses of wine a week while pregnant and my kid was fine".

If everyone started drinking 2 glasses of wine a week in the third trimester, FAS rates will increase, and mean IQ score will dip. Will they dip by a lot? Probably not, but definitely not zero. So of course anyone in a position to make a society-wide recommendation, recommends "no alcohol".

Individual parents may look at data and say, that's a risk they're willing to take.

So...research was done and people learned they were wrong?

I'm not quite following what you think the takeaway was here?

The "Back to Sleep" campaigns saw something like a 50% decrease in infant mortality within 12 months in the UK. It isn't really comparable to "fad diet of the year" medical advice.

I don't agree with her on everything, but Emily Oster's chapter on SIDS (in the second book I think, Cribsheet) I think does a good job outlining the data on it. And my brother just had a kid who also would absolutely not sleep on his back. Once he could roll he just sleeps on his tummy (but once they can roll SIDS is not really an issue)

Medicine is wild. Lots of things that were taken as gospel even 15 years ago have been completely flipped on their head. The NHS massively changed their advice last year on asthma treatment and it’s basically the opposite of what they said before. We’ve seen the same with musculoskeletal injuries, nerve injuries and just general recovery.

Definitely worth a conversation!

The WHO claims the ideal overnight temperature for sleeping is 18 degree (C). I lived in Vietnam for a decade and to a rough approximation 0% of the population ever experiences 18 degrees overnight for sleeping. And I imagine it's not too different in much of Thailand, Indonesia, India, etc.

I'm pretty dubious that hundreds of millions, maybe billions, are thriving in "suboptimal" overnight temperatures!

Does the African savanna regularly get down to 18c at night, such that we'd expect that to be some kind of evolutionary equilibrium that just happens to map to (northern) European and North American norms?

Plus the effect might be small or something easily adapted to.

  …in the nordics you should have them sleep outside…

Full background: https://www.reddit.com/r/Ureaplasma/comments/qavqf1/the_urea...

Is this another example of culturally specific health "facts" or have I just missed something?

In european/North American countries where people normally drink out of ceramic mugs, people generally end up drinking hot drinks at a lower temperature

https://www.mskcc.org/news/burning-issue-truth-about-hot-dri...

> Western sources suggest that eating sushi while pregnant is little short of stabbing yourself in the abdomen with a sharp knife, Japanese sources explicitly recommend sushi as a light and healthy meal

This is not the case, peanut puffs are a common early solid food in the US. Before that there are allergen mixes you can add to milk/formula.

All the recommendations I saw when my kid was born said early exposure to allergens is good to reduce chances of allergic reactions.

https://emishia-clinic.jp/low-dose-pill/on-my-period-sex/

(And if you have a country filter/hint set on your search engine of choice, you disable or change it appropriately.)

If I want to do a search for Chinese content, I go to baidu, enter a query that makes sense to me, and look for a suggested query that looks right.

Doing this is much less useful than you might think. You'll still lack the ability to interpret the search results, or the pages you click through to. It's not an issue of translating the content. You have no idea what kind of pages you've turned up, what the ones you want should look like, or how information is laid out in the foreign websites. Your habits from the English-speaking internet won't apply.

NB - It is a known phenomena in bone marrow transplant recipients that the donor DNA can be taken up by host cells by unknown mechanisms, so it isn't a guarantee that the endometriosis was developed from the transplanted bone marrow.

I think this is a story too common in women's healthcare.

It's often massively underfunded and underesearched, another symptom of the fact our society had not let women into STEM/politics for decades, and continues to erect barriers to encourage them not too.

I like the fact you spelled out the incentives for PhDs to do so at the end ;). Would be great!

Funny, my experience is the absolute opposite of this claim.

Also, I could be wrong but I'm pretty sure breast cancer is the single most well-funded areas of cancer research.

There's a toolbox a certain type of person likes to reach for even when the evidence is inconsistent.

Pregnancy relieves the symptoms but is not a cure. But surely you'd have to consider lower fertility has something to do with the increase in endometriosis.

[0] https://aeon.co/essays/why-pregnancy-is-a-biological-war-bet...

...or maybe it's because of that war it works as well as it does? Maybe it takes agents in opposition to evolve enough redundancies and contingency plans to get things working?

Before Mendel, at least some people hypothesised there must be some sort of "battle of the germ cell" that powered evolution, because unimportant functions -- even when they aren't actively detrimental -- tend to be forced nearly out of existence.[1] Even our bodies, miracles of cooperation, evolve to some degree under antagonism.

Thanks for referencing that article, though. I was going to but now I don't have to. Everyone should read it. Utterly fascinating.

[1]: The example that comes to mind are the femurs of whales. They are absolutely tiny. Much smaller than can reasonably explained by them being a problem for the whale itself.

It has also been known to degrade egg quality, resulting in total infertility in some (including my wife and her aunt—jury is still out on the cousin).

I don’t think most reproductive surgeons think of endometriosis as untreatable. 1% rate of having some kind of complication from the surgery doesn’t sound crazy high to me. The recurrence rate I think depends pretty heavily on how pervasive the case was and how soon it was caught.

My wife was in her late 20s when she had surgery to have it cut out via laparoscopy, and it wasn’t really a big deal. She had a hysterectomy this year for other reasons, over 15 years later and had no signs of recurrence.

i feel like something has been left out. why would uterine lining cells outside the uterus lead to infertility inside the uterus? from this description, I can see all sorts of things going haywire, but it was my impression that the uterine lining was scarred and otherwise rendered infertile for implantation.

The quoted text mentions for example the ovaries themselves, which if damaged can not release eggs, and the fallopian tubes, which if damaged can not transmit eggs from the ovaries to the uterus. These are outside the uterus.

On the plus side, IVF works pretty well for many women with endometriosis. IVF patients with endo have only somewhat worse stats than other IVF patients.

https://www.youtube.com/watch?v=KzA9VATcZhY

> The speaker had been experiencing symptoms like period pain, bloating, and fatigue for years, visiting many doctors without getting a proper diagnosis. When severe pain developed, a GP ordered an ultrasound but the speaker initially ignored the results, assuming it was just an ovarian cyst. However, after using the Ada AI medical diagnosis app, which asked questions about symptoms and calculated probabilities of various conditions, it suggested endometriosis - a condition the speaker had never heard of. This prompted them to return to their doctor, where the ultrasound results confirmed the AI's diagnosis of endometriosis.

There are probably many more instances of this disease in men that never get triggered and discovered due to atypical hormonal levels being required.

Our bodies are weird systems.

I pointed out her history (or hystery, heh) and the kinda obvious gluey, webby bits in the pictures (they're quite visible once you look at enough of them).

Then I grilled him on which of the then-three brands were on the market and which were had on hand. Dude acted like he was just yanking a bad video card on a Friday afternoon, which I found less than optimal.

I was not surprised when, post-surgery, the rest of the staff attempted to hustle us out the door. I had abort their well-rehearsed ejection procedure to get aftercare instructions ... and to make sure the scripts had already been called in ... and then to get the follow-up appointment cemented and the "oh shit something has gone wrong" post-surgical emergency contact information. I suppose in the future they will have a kind of water slide from the recovery room into the parking lot, and they just will aim for the open passenger-side door.

Your water slide to the parking lot is an apt description—-I can 100% believe people wanting such a thing.

1. https://pmc.ncbi.nlm.nih.gov/articles/PMC10150018/

(I don’t consider low-T clinics as “healthcare”)

I don’t think this is enough to affect funding.

https://pmc.ncbi.nlm.nih.gov/articles/PMC5833878/

Honestly I've always thought this line of argumentation is dumb. Pregnancy is complicated, we don't understand it, and there are obvious ethical problems studying pregnant women.

There are many syndromes that affect men and women we similarly know little about.

The body is complicated. We shouldn't attribute to malice what is best explained by lack of knowledge

I pretty much agree with her. This disease gets extremely painful from what I can tell.

For what it's worth, I saw the comment earlier and thought "not great but don't want to silence a valid point about gender biases in something as important as medical research", but looking now at the flamewar that's resulted, I'm afraid we just have to uphold the guidelines.

Another thought that came to mind when I saw your comment:

Over the years I've had my own experiences with illnesses that cause great pain, distress and limitations on life options, and during those times I often had thoughts along the lines of "people in my category with illnesses like this just aren't considered important enough to attract research funding and care for our plight".

Having continued to look into the topic very deeply, another explanation arises: conditions like this (complex disorders involving autoimmunity – even of the relatively mild kind that I had) are just very difficult to research, because as soon as you start studying a cohort of patients, it turns out to be very difficult to find consistent factors that explain the condition.

My understanding is that endometriosis (and I have learned a little about it from seeing loved ones being diagnosed with it or evaluated for it) is that it's of the same kind; it seems to be at least partially an autoimmune disease (or frequently co-morbid with autoimmune diseases) and, as the article states, it has been found to be extremely difficult to explain, let alone treat. We see similar obstacles with other autoimmune illness like ALS and MS, both of which have had huge amounts of funding over the years but still elude researchers' attempts to even explain them, let alone cure them.

It just seems that some illnesses are extremely hard to explain and cure, even with vast amounts of money invested in them, and that's particularly the case with anything involving autoimmunity.

And of these more painful conditions the research is... Just as lacking. I do get the desperation for... Something. Anything.

Actually Covid saw the biggest research boost - my own is seen as a good control for long covid. A number of autoimmune conditions got similar increased interest. Right up until a political group decided covid research was a nice target.

(I've been in pain for 2/3rds of my life. Pain generally described as exceeding childbirth. There is never a lull. There is no treatment that works.)

When I had tonsillitis, the pain was so intense and so persistent until the 3rd day of antibiotics, I was tempted to just throw myself off a bridge to make it stop. Had I been under the impression there was no way to make it stop in a few days, I suspect I would have.

It's senseless to compare experiences of pain between people. Unless it's like "a pinprick" vs. "crushed by a motorcycle" or other obviously extreme contrasts.

However, if you do survive the first five years... You become unlikely to suicide out of it. You've learnt to live in it.

I think the stats on that are fairly similar to endo, from what little research that there is. If you can make it past the first few years of everyone ignoring you and calling you weak, and telling you to suck it up, you are now better prepared to deal with the daily mental siege.

(Though you are under siege. And sometimes those walls do collapse, and you're broken again. You can't necessarily take on more, just become you're stronger - you're stronger but you're spending all the extra effort just to stay alive.)

But to end on a completely different note, that can make a few people stare: I'm in pain in my dreams, too. I don't remember what it's like without.

Easy to say, harder to do. The will to live is probably stronger than you realise. I experienced a short 2 week painful illness and felt similar to you. I later experienced the same thing for 2 years. You adapt and learn to cope.

I wish we would stop turning everything into a competition. As a man with a similar 'tricky' condition I can confirm the medical profession is generally shit with anything tricky regardless of your sex. I have experienced the exact same fight for treatment and investigation that I often read of women experiencing.

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

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.

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.

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

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?

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.

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.

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/

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.

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.

[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).

>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-...

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-...

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