Comment by kjellsbells

Comment by kjellsbells 2 days ago

133 replies

I'm always struck by stories of how difficult it is to get a condition diagnosed. Endometriosis is a great example as the OP author notes.

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

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

giantg2 2 days ago

"I don't know whether this is a result of..."

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

  • paulryanrogers 2 days ago

    Up to 25% of women have endo, in some communities at least.

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

    • chongli 2 days ago

      We need more doctors.

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

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

      • giantg2 a day ago

        The vast majority of doctors support increasing the number of doctors. Most doctors are not members of the AMA and many disagree with their positions on many subjects. The main issue with the shortage is the lack of funding for residencies that is mostly paid for by Medicare and grants. Medical schools don't want to increase the number of students if they won't have slots to finish their training to become doctors. The limits you're talking about are comparatively minor issues as the limits imposed on MDs have led to more DOs. And what nobody wants to talk about are the thousands of slots that go to international medical students, the majority of which do not stay after training.

        They currently have a senate bill to increase funding and incentivize the most needed specialties (GP and psych). We'll see how that goes. At this point, it feels like interest in being a doctor has diminished - there's too much training, many specialties don't pay well enough to justify the delayed earnings and costs, the hours can be miserable, and it's a nightmare to deal with all the regulations and legal aspects.

    • voxl a day ago

      In my opinion we need to elevate doctors and invest heavily into more nurse practitioners and the like. I don't think you need to see a doctor all the time, for procedures or surgery yes, or if you need someone to actually investigate something.

      But there is no point in pretending doctors are going to surge, the current administration is trying to make being a doctor harder, not easier. Doctors also avoid certain fields because it doesn't pay enough. The supply is also artificially restricted. It's a system so fucked that it's better to ignore it and pump out PRNs

    • ACCount36 a day ago

      At this rate, it might be easier to train ChatGPT for better diagnostics performance and give it access to health records than to untangle decades worth of legislative and institutional inertia that prevents "more doctors".

      • dirtyhippiefree a day ago

        AI hallucinating an art project is one thing…but medicine…?!?

        Heaven help us.

    • kulahan 2 days ago

      We need more of all healthcare professionals. Nurses and CNAs are getting run ragged just the same.

      • verisimi a day ago

        Have you heard of Iatrogenesis?

        https://www.wikipedia.org/wiki/Iatrogenesis

        > In 2013, an estimated 142,000 persons died from adverse effects of medical treatment, up from an estimated 94,000 in 1990.

        Careful what you wish for!

        And, imo, an awful lot of deaths are due to issues that cannot be classified as caused by doctors - eg dosage error over time, something that mitigates symptoms but allows the underlying to deteriorate, etc.

    • a_bonobo a day ago

      >Up to 25% of women have endo, in some communities at least.

      I feel like that's a relatively novel insight. These days I hear about endometriosis once a month or so, mostly because of outspoken women advocates. I could swear I've never heard of endo before 2020.

      As an example, the Australian National Action Plan for endometriosis is from 2018. Perhaps the currently practising generation of doctors did not have this kind of awareness during their training, and the next generation will fix it?

      • jmcgough a day ago

        I think because it's seen as gyn health (though endometriosis can occur in men in rare cases), people often don't feel comfortable talking about it. Relatedly, pregnancy complications weren't really on my radar until I started working in the emergency department and discovered just how common they are.

    • giantg2 a day ago

      The studies are wild. The reported range of affected individuals is 2-50% depending on which study you look at. While genetics are the main risk factor, there are all sorts of environmental risk factors that have been linked to it, especially in uetero. Many of those things are highly common such as BPA, PFAS, dioxins, and cosmetic use.

  • NBJack 2 days ago

    Well, that, and deviation from the established practices can make it difficult to get paid by the insurance company and/or open you up to legal risk (particularly if something goes wrong). Or so I understand from those in the system in the US.

  • renewiltord 2 days ago

    Amusingly this is why people say LLMs will beat doctors. It’s because the 90% of cases is so easy that a motivated guy with Google can get there and a smart NP can get there too.

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

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

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

    • toomuchtodo 2 days ago

      I discovered a friend’s chronic medical issue that two VA specialists and a PCP couldn’t figure out using an LLM health project that had been posted here. Works when it works, n=1. Certainly, don’t trust the robot, but it doesn’t hurt to rubber duck debug with it to find blind spots. Fancy search engine sometimes is right (although it can lie too!).

      (Bone tuberculosis)

      • wizzwizz4 2 days ago

        Language models are really good at free association tasks, such as semantic fuzzy search. Next token prediction is among the worst possible ways to use them (although if there's no other obvious way of getting the information out of the model, it works in a pinch).

        Which project did you use?

    • giantg2 2 days ago

      I think a great use case for AI is to act as triage for a new case so that it can send you to the right specialist and have them evaluate you. It could potentially remove the need to see a GP for a referral to a specialist, thus freeing the GP up to spend more time treating others.

      • renewiltord 2 days ago

        You don't need a GP for referral to a specialist currently. You just have to pay. It's what I do.

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

      • cess11 2 days ago

        How are you going to make it reliably stop people that lie to get into contact with medical professions?

    • baxtr 2 days ago

      Why "beat"? Why not "augment" or "improve"?

  • BobbyTables2 2 days ago

    Indeed.

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

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

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

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

    I’m tired of it.

    • nradov 2 days ago

      What would you propose as an alternative? Healthcare costs are already high. Imposing step therapy requirements to try cheaper treatments first is one of the few ways that insurers have to control costs. And the cheaper treatments do work well for many patients (or they recover on there own just due to time).

      • kulahan 2 days ago

        Look at any nation that doesn’t have these unbelievably, ridiculously, insanely high costs. This isn’t an unsolved problem, nor is it a sensible one.

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

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

  • MisterBastahrd a day ago

    I've had three doctors in the past year tell me that either I wasn't a candidate for cancer treatment because I was gonna die in the next 3 years anyway, or that my best bet was a liver and heart transplant.

    All of them read the first page of my medical records upon being admitted to a hospital in January. Not a single one of them read anything after that and it shows. One of them was stricken and amazed that I was walking into his office without aid or an oxygen mask.

    Gives me great confidence in their ability to pay attention to detail.

  • ipaddr 2 days ago

    Public or private medicine shares the same issue. In fact there is no John Hopkins you can pay in the public system so things never get solved.

  • KaoruAoiShiho 2 days ago

    Yep this is something that only AI can solve. Same situation applies to education, sales, HR. Human powered bureaucracies and systems suck.

    • majormajor 2 days ago

      AI would be deployed to behave like the median doctor (at best - or maybe the lowest-common-denominator) to avoid blowing up costs with 99%-likely-to-turn-up-nothing hunts for super-rare conditions.

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

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

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

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

      • KaoruAoiShiho 2 days ago

        The costs are so low you can easily inference a bit longer. The idea that a computer would be as lazy as a human is not even close to reality.

      • sfn42 2 days ago

        You can do an obscene amount of inference for a fraction of the cost of an average doctor's appointment.

    • dayofthedaleks 2 days ago

      Any AI will most certainly reflect the biases of the bureaucracies responsible for their creation.

      • KaoruAoiShiho 2 days ago

        Nah AI can easily be programmed to be much more patient and investigate edge cases and figure out personalized solutions thoroughly and provide bespoke service. This problem would be solved, though of course there are other issues with biases of the bureaucracies.

    • tbrownaw 2 days ago

      > Yep this is something that only AI can solve.

      How? I'd expect them to already have standardized lists of the most useful next thing to investigate given what's already known, and a modern "AI" would actually be worse at that than some sort of solver engine with a database of costs/risks (for tests) and conditional probabilities.

      Maybe if they're still using (digitized versions of) paper flowcharts things could be improved, but the most powerful tech should be old-school stuff rather than modern "AI".

      • KaoruAoiShiho 2 days ago

        No normal person would actually be able to use a specialized solver database, the woman in this story would already be dead before the guy figures out that such a thing exists and manage to make an account. https://x.com/deedydas/status/1933370776264323164

        LLMs already work fantastically with pretty good UX.

        • tbrownaw 2 days ago

          Does "here are the most useful things to find out next" really need that complex of a user experience?

    • snitty 2 days ago

      >Yep this is something that only AI can solve.

      [citation needed]

Spooky23 2 days ago

Frontline medicine is all about “just do x” hacks to try to move quicker. We turn people into a fault tree, and enforce that with EMR and audit/review you create a bias to focus on the 80/20 approach. Essentially turning medicine into a helpdesk.

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

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

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

  • margalabargala 2 days ago

    > Sending 1,000 people to CT to identify 5 tumors will cause 50 other complications.

    This is something frequently missing from discussions like this.

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

    • Spooky23 2 days ago

      Not only that, but you have red herrings. Going down the rabbit hole chasing random anomalies doesn’t solve the patients problem either!

  • NooneAtAll3 2 days ago

    what complications are there from CT scan?

    asking as someone that had it

    • macNchz 2 days ago

      Not a doctor, but to my understanding there are two main issues with CT scans in this context: the radiation from the scan itself, and the fact that it can lead to "incidental findings" which then might cause a cascade of other, more invasive tests with risks of their own.

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

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

placardloop 2 days ago

My significant other is going through this situation, and in my experience it seems as though most doctors just simply don’t care to actually find a diagnosis (or at least, don’t have the time or motivation to care), combined with a hefty dose of “that’s not my job”. My SO has been to specialist after specialist who spends a grand total of 2 minutes listening to the symptoms, followed by “well let’s do some blood tests and see what they say” (ignoring that the last 5 doctors already did blood tests). And then when the blood tests come back with nothing obvious, the doctor just throws up their hands and says “well I don’t know what to do, you should go see <other specialist>”.

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

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

  • epistasis 2 days ago

    Another way to look at it instead of "they don't care" is "they have nothing they can offer."

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

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

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

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

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

    • dragonwriter 2 days ago

      > We have progressed fantastically on the common medical conditions, but once you get into more rare stuff it gets a lot harder.

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

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

      • epistasis 2 days ago

        I really regret using "common" here, because the issue with endometriosis is the complexity of the disease, lack of understanding, and lack of clinical management tools. Not the rarity.

      • tbrownaw 2 days ago

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

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

    • dinkumthinkum 2 days ago

      While I might be sympathetic to what you’re saying, endometriosis is not a very rare condition.

    • troupo 2 days ago

      > but once you get into more rare stuff it gets a lot harder.

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

      • epistasis 2 days ago

        You are correct, and my language was not very helpful there!

        The article shows that 10% is a low estimate.

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

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

      • ipaddr 2 days ago

        For IBS you get similiar treatment male or female. It's about medicine not having answers for treatment and lack of easy testing not gender roles.

    • asdf6969 2 days ago

      They genuinely don’t care. Don’t over think it

  • drewg123 2 days ago

    What kind of specialists? An ex of mine had severe endo, and it was finally treated by a reproductive endocrinologist (in Raleigh, NC) after going through many other doctors.

  • Henchman21 2 days ago

    What our "system" seems to actually incentivize is keeping people chronically ill so that they're forced to continually pay for their non-treatment.

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

    • margalabargala 2 days ago

      I see this view sometimes and it really annoys me.

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

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

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

      • Henchman21 2 days ago

        I think we agree on this point almost entirely. But let’s not pretend the doctors, nurses, and researchers are running the show. This attitude of mine persists because of the way the insurance companies run the system: profits first, patients last.

        Sorry to annoy you.

      • frereubu 2 days ago

        Taking the strongest plausible interpretation of the comment you're replying to, systems are not the people who work in them. It's perfectly possible for a system to be tuned to something other than pure patient benefit, while the people who work inside that system are trying to bend it towards that.

      • renewiltord 2 days ago

        This is totally untrue. Slow rolling early care to raise total dialysis likelihood was sufficiently widespread. Not the majority of docs but sufficiently large numbers. It is defensible medically to do that because you don’t need to treat something that hasn’t happened yet.

        • margalabargala 2 days ago

          How widespread is "sufficiently"? Especially since you also mention it's a minority? I've not heard of the specific example you mention, do.you have more details?

    • liquidise 2 days ago

      I feel this is more a societal failing than a medical one. Most people don’t want to take better care of themselves: eating better, portion control, more regular exercise, etc. Too hard.

      People want a pill to solve the ailments they have.

      • kjkjadksj 2 days ago

        Exactly why weight loss pills are a multibillion dollar industry today.

        • nradov 2 days ago

          Technically those are mostly weight loss injections now. The pills don't work nearly as well.

    • tekla 2 days ago

      People want medication to solve their problems, not actually try and solve things without paying money for it

    • nradov 2 days ago

      Nonsense. The clinicians working in the healthcare system have zero incentive to keep patients chronically ill. This isn't a matter of keeping patients coming back: most doctors already have more workload than they can even handle.

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

      https://peterattiamd.com/outlive/

scythe 2 days ago

Popular understanding, particularly in the United States, is a little behind the scientific opinion on the subject. Most women I've talked to are still under the impression that endometriosis can only be diagnosed by laparoscopy. But there have been improvements in the use of contrast MRI for diagnosis, and as of 2022 the guidelines in Europe recommend MRI as the first option.

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.

GrantMoyer 2 days ago

I think it's probably just really hard to diagnose uncommon diseases in people (although endometriosis in particular may be fairly common). I have trouble diagnosing some bugs in software at my job; I imagine it's much harder to diagnose issues in a human body.

bane 2 days ago

Every woman I know who's been properly diagnosed with endo had to self-diagnose first, and then advocate to be tested. Not a single one was properly diagnosed by their doctor first. I'm not sure what the reason is, even women who go to doctors who specialize in endo seem to miss it unless the patient self-identifies.

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

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

swat535 2 days ago

I was suffering from Secondary Hypogonadism despite my Testosterone levels showing "normal" for years and suffering from all the symptoms: brain fog, fatigue and no libido.

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

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

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

  • 0x1ceb00da a day ago

    > despite my Testosterone levels showing "normal" for years

    > T levels back in range.

    Were the T levels normal or not?

    • hammock 19 hours ago

      I would also like to know this. And “diagnosis” of “hypo gonadism” is a little hand wavy here. HRT is going to reduce “brain fog, fatigue and no libido” no matter what you have (or don’t have), just got a find a doctor that will do it for you. Take your health into your own hands

  • CjHuber 2 days ago

    I'd be interested in what the problem was. Was it too high SHBG and thus too low free testosterone? I'd be shocked if any doctor couldn't recognize that.

  • dzink 2 days ago

    The major difference between private and public health care providers. Public providers are often burned out to a crisp and have little empathy or energy left. Private providers are compensated for each task and the incentive system and work ethic is dramatically different.

  • throaway2501 2 days ago

    i have dupuytrens (aggressive and at a young age), and my canadian doctors didn’t know that there was a radiation oncologist downtown doing rad therapy for it. waited 4 months and found out on google. how is it defensible that a doctor doesn’t know that someone in the same system as them offers treatments?

smeej 2 days ago

I just had an "on this day" reminder pop up that told me I've been searching for the answers to two relatively common problems for twelve years with no progress, unless you count ruling out the same damn primary suspects over and over and over. I get migraines at the same time of month every month, and I have chronic pain in my heel and 2nd metatarsal--and no, it's not plantar fasciitis.

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

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

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

  • itronitron 2 days ago

    I recommend taking probiotic Bacilis Subtilis gummies if you feel a migraine starting, I don't know why it works but it does (and I first heard about Bacilis Subtilis hear on HN.)

  • dapper_bison17 2 days ago

    That really sucks. It sucks even more that your situation is common to many many women.

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

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

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

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

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

    Let me know :)

    • smeej 17 hours ago

      Does her program have a website or something where I could learn about it and find her contact info?

      I've dealt with a handful of such specialists before, each of which thought they had discovered something everyone else was missing, so before I consider shelling out another five figures on hopeium, I'd love to read/listen to anything she's said publicly about what she's doing.

  • BobaFloutist 2 days ago

    Are you a woman? Do you take homona birth control other than the "Mini pill"? My wife read online that it's not safe to take typical hormonal birth control on the standard pill if you get migraines with auras, because it increases your risk of stroke and mentioned her migraines to her gyno, who was like "Oh shit yeah we have to put you on the mini pill then." Which was crazy, because aura migraines wasn't on the laundry list of possible conditions on the intake form. Anyway, she got fewer migraines after changing birth control, so...maybe relevant?

    • smeej 17 hours ago

      I am a woman. I have never used birth control of any kind. (I know, I know. Unicorn. But I'm long-term celibate for personal reasons, so unexpected pregnancy is not a concern.)

      It is a bone of contention with my gynecologist that I am not willing to suppress my (screened and confirmed to be) perfectly healthy "ovulation axis" on the off chance it might decrease my headaches.

    • spondylosaurus 2 days ago

      IIRC the birth control and migraine relationship is twofold: (1) unlike traditional BC pills, mini-pills don't contain estrogen, which is beneficial because of the link between estrogen and migraine frequency; and (2) unlike most traditional BC pills, most mini-pills are "monophasic," which means you have less dramatic hormonal fluctuations throughout each cycle.

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

      • smeej 16 hours ago

        I can definitely say that the couple cycles where a NaPro doctor had me supplementing both estradiol and progesterone at different points of the cycle led to the most incredible pain I've ever experienced. I fired the guy rather shortly thereafter when he ignored my existing meds list and wrote me a prescription for the headache that would have landed me in the hospital were I not a careful reader, so I don't know if it might have gotten better if it were tuned in better.

  • wbl 2 days ago

    Migraine drugs have improved incredibly in the last few years. As a fellow sufferer I recommend you ask about them: given the same time of month you can likely preempt them entirely. I hope you get some answers!

  • Asooka 2 days ago

    It is possible you have an undiagnosed latent infection, I spent nearly a decade with one trying this and that until I hit a winning combination. If you go looking for this protocol you'll find the absolute worst schizo rants online, but the actual ingredients have solid science behind them (you can literally look them up on google scholar):

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

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

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

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

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

    • smeej 17 hours ago

      Thanks for the suggestions. I've done extensive trials with the minerals and vitamin D, and both hair and serum tests keep saying that's not the problem.

      I'm on NAC too, but oregano oil gave me the worst heartburn I've ever had in my life. Do you think the black seed oil might neutralize it on that front?

      I did carnivore for about three weeks before my body was absolutely shutting down. It was catastrophic for me. I did spend 20 months on an elimination diet of slow-cooked meat and boiled vegetables (exclusively, without a single cheat, which was pretty brutal), which helped clear up some intestinal issues that were misdiagnosed as ulcerative colitis, but it didn't do a thing for the headaches.

      It's somewhat reassuring that most of the out-of-the-box suggestions people have are things I've already tried, because at least it does confirm for me that I've done a decent job of covering my bases, but alas, the pain persists.

matsemann 2 days ago

I wonder how much is due to lack of feedback? I went somewhere due to knee pain. After some time got a diagnosis and some exercises. Didn't feel it made sense, so I went somewhere else and got a better (the correct) diagnosis and got my issue fixed.

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

ozim 2 days ago

"Now it is a strange thing, but things that are good to have and days that are good to spend are soon told about, and not much to listen to; while things that are uncomfortable, palpitating, and even gruesome, may make a good tale, and take a deal of telling anyway."

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

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

bookofjoe a day ago

>Opinions expressed are my own, and not those of any employer, whether past or present.

For lulz you could add "or future"

BrandoElFollito 2 days ago

It was the case when my wife was diagnosed with MS 17 years ago. There was no "test for MS", just a statistical answer "it looks like this is MS because of some symptoms, some non-conclusive reults and how the MRI look like".

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

I wonder if there are better tests today.

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refurb 2 days ago

I know a few doctors and the vast, vast majority of patients have what you thought they had when they walked in the door. Boring, could-have-guessed illnesses (or maybe not).

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

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

gosub100 2 days ago

> The problem was incredibly evident for female patients.

Did the NYT evenly select male and female patients? Knowing about their political leanings, I highly doubt it.