[HN Gopher] Endometriosis is an interesting disease
___________________________________________________________________
Endometriosis is an interesting disease
Author : crescit_eundo
Score : 303 points
Date : 2025-06-13 22:40 UTC (1 days ago)
(HTM) web link (www.owlposting.com)
(TXT) w3m dump (www.owlposting.com)
| twodave wrote:
| Not sure if the article mentioned it (writing style was getting
| on my nerves about half way through), but endometriosis is also
| highly hereditary. My wife's mother has 2 sisters. One sister had
| endometriosis and the other two had daughters (including my wife)
| who had it.
|
| It has also been known to degrade egg quality, resulting in total
| infertility in some (including my wife and her aunt--jury is
| still out on the cousin).
|
| I don't think most reproductive surgeons think of endometriosis
| as untreatable. 1% rate of having some kind of complication from
| the surgery doesn't sound crazy high to me. The recurrence rate I
| think depends pretty heavily on how pervasive the case was and
| how soon it was caught.
|
| My wife was in her late 20s when she had surgery to have it cut
| out via laparoscopy, and it wasn't really a big deal. She had a
| hysterectomy this year for other reasons, over 15 years later and
| had no signs of recurrence.
| tptacek wrote:
| The article mentions it. If you bailed before that point, you
| bailed _just_ before it got really good.
| cantor_S_drug wrote:
| 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.
| anon291 wrote:
| Just wait til you find out men can get it (extremely rare)
| bravesoul2 wrote:
| Is that with or without hormone treatment?
| lostlogin wrote:
| There is a strong correlation with hormones. It's in the
| post.
| bravesoul2 wrote:
| Thanks I wanted to see the commenters perspective and if
| they have different information or opinions.
| ddingus wrote:
| 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!
| tptacek wrote:
| Nope. Read the article! It's good.
|
| https://pmc.ncbi.nlm.nih.gov/articles/PMC5833878/
| lazyasciiart wrote:
| "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.
| anon291 wrote:
| > what if Men got this disease... the law would change
| quickly!
|
| Honestly I've always thought this line of argumentation is
| dumb. Pregnancy is complicated, we don't understand it, and
| there are obvious ethical problems studying pregnant women.
|
| There are many syndromes that affect men and women we
| similarly know little about.
|
| The body is complicated. We shouldn't attribute to malice
| what is best explained by lack of knowledge
| abhishaike wrote:
| This is in the article!
| RamblingCTO wrote:
| I don't think it's beneficial to just put both in the same pot.
| It's just a similar condition in similar tissue afaiu. Men
| don't have a uterus.
| anon291 wrote:
| Endometriosis is the presence of endometrial like tissue
| outside the uterus. Male cells retain the ability to
| transform into endometrial cells given the right stimulus. In
| rare pathological cases, this happens.
| fsckboy wrote:
| > _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.
| streptomycin wrote:
| 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.
| mlyle wrote:
| You don't understand why uterine cells screwing up the
| fallopian tubes or ovaries would cause infertility?
| setopt wrote:
| > why would uterine lining cells outside the uterus lead to
| infertility inside the uterus?
|
| The quoted text mentions for example the ovaries themselves,
| which if damaged can not release eggs, and the fallopian tubes,
| which if damaged can not transmit eggs from the ovaries to the
| uterus. These are outside the uterus.
| twodave wrote:
| 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.
| SwtCyber wrote:
| It's less about scarring inside the uterus, and more about
| chaos in the neighborhood
| ddingus wrote:
| [flagged]
| grumpy-de-sre wrote:
| Honestly it's probably just because the condition responds well
| to hormonal therapy. If you've got a cheap and effective
| treatment available for a condition it's hard to justify
| spending research dollars on digging deeper into it
| (particularly something as strange as Endometriosis, eg. where
| do you even start looking).
|
| The strong genetic component also makes it somewhat unlikely
| that it's something we'll be able to ever eliminate completely
| but perhaps there will one day be targeted drugs that can stop
| disease progression. It's good to see more research dollars
| being made available in recent years.
|
| There's a lot of other conditions that receive a similar lack
| of attention, for a common male analogue "chronic pelvic pain
| syndrome".
| d1sxeyes wrote:
| 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.
| unixhero wrote:
| On other areas it's the other way around, breast cancer gets a
| lot of attention while prostate cancer gets less.
| mattigames wrote:
| 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"
| morsch wrote:
| Oh there are various disbalances at work. Maladies that
| affect the poor are underfunded as well.
| enaaem wrote:
| I agree. It is time for men activists to vote for parties
| that put more money in fixing homelessness and mental health.
| shakna wrote:
| Don't worry, we are susceptible to many pain conditions. Some
| of which are worse, and some of which women can get, too.
|
| And of these more painful conditions the research is... Just as
| lacking. I do get the desperation for... Something. Anything.
|
| Actually Covid saw the biggest research boost - my own is seen
| as a good control for long covid. A number of autoimmune
| conditions got similar increased interest. Right up until a
| political group decided covid research was a nice target.
|
| (I've been in pain for 2/3rds of my life. Pain generally
| described as exceeding childbirth. There is never a lull. There
| is no treatment that works.)
| pcthrowaway wrote:
| 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.
| shakna wrote:
| 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.
| kqr wrote:
| 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.
| basisword wrote:
| >> 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.
| basisword wrote:
| >> 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.
| tomhow wrote:
| 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.
| codetweep wrote:
| The article sort of glosses over a major distinction regarding
| the surgical approach to endometriosis -- 90+% of OB/GYNs are
| trained to ablate (burn-to-destroy) the affected tissue, whereas
| more recently, a crop of surgeons have begun to specialize in
| excising a wide area of tissue surrounding the affected tissue.
| Many times, the tissue to destroy is not on the surface - it is
| deeply infiltrating what it has adhered to. Burning it is just
| like cutting grass, it'll come right back. Success rates with
| excisional surgery are markedly better, but not a silver bullet.
| twodave wrote:
| 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...
| Sniffnoy wrote:
| So, why don't cancer treatments work here? Or would they likely
| work here but they largely haven't been tried yet? (See also
| codetweep's comment about surgery.)
| Nasrudith wrote:
| Endometriosisis is 'benign' in the self-contained sense only. I
| would imagine that changes the target profile. I don't think
| there is are any rigid 'out of scope' policing drugs or
| biological mechanisms for that. As opposed to cancerous
| malformed biomarkers which scream "I shouldn't exist!" to the
| immune system.
| grumpy-de-sre wrote:
| 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/
| at_a_remove wrote:
| I had to gently chide a surgeon who came out in the middle of a
| friend's hysterectomy (and bonus ovary removal) to do a kind of
| "drive by, not expecting any kind of feedback" picture show in
| the middle for not having a plan on adhesion barriers. He hadn't
| planned on doing them!
|
| I pointed out her history (or hystery, heh) and the kinda obvious
| gluey, webby bits in the pictures (they're quite visible once you
| look at enough of them).
|
| Then I grilled him on which of the then-three brands were on the
| market and which were had on hand. Dude acted like he was just
| yanking a bad video card on a Friday afternoon, which I found
| less than optimal.
|
| I was not surprised when, post-surgery, the rest of the staff
| attempted to hustle us out the door. I had abort their well-
| rehearsed ejection procedure to get aftercare instructions ...
| _and_ to make sure the scripts had already been called in ...
| _and then_ to get the follow-up appointment cemented and the "oh
| shit something has gone wrong" post-surgical emergency contact
| information. I suppose in the future they will have a kind of
| water slide from the recovery room into the parking lot, and they
| just will aim for the open passenger-side door.
| a2tech wrote:
| Any surgeon will tell you the best patient is the one you don't
| have to talk to, so don't think your experience is an outlier.
|
| Your water slide to the parking lot is an apt description---I
| can 100% believe people wanting such a thing.
| soared wrote:
| Sounds like you need to start going to a different hospital.
| emmelaich wrote:
| 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...
| kqr wrote:
| > 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.
| jwrallie wrote:
| 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.
| pcthrowaway wrote:
| Do you mind sharing a promising article in Japanese which can
| be translated?
| worldsayshi wrote:
| This makes me wonder how to search for content in another
| language? I mean most sites are almost trivially translatable
| by now.
| thaumasiotes wrote:
| 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.
| OJFord wrote:
| 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.)
| jwrallie wrote:
| 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/
| 317070 wrote:
| 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.
| kqr wrote:
| 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.)
| maccard wrote:
| > But when I was an infant -- which is not that long ago,
| parents were advised otherwise
|
| Medicine is wild. Lots of things that were taken as gospel
| even 15 years ago have been completely flipped on their
| head. The NHS massively changed their advice last year on
| asthma treatment and it's basically the opposite of what
| they said before. We've seen the same with musculoskeletal
| injuries, nerve injuries and just general recovery.
| whatevermom wrote:
| Sorry, but what was the change? Adding corticoid inhalers
| when treating an asthma episode? Curious since I have
| asthma and didn't hear about this change yet.
| maccard wrote:
| The short of it was that they decided salbutamol was
| overprescribed and shouldn't be given to anyone who isn't
| taking a corticosteroid inhaler at the same time. The
| advice has changed from "if you feel like you need your
| blue inhaler take it" to "your asthma should be managed
| by your corticosteroid dose, and if it's not you should
| adjust". Obviously not suitable for everyone but for
| people like my dad it got him from using his reliever
| once a week to not having an active prescription for it
| anymore.
| jmole wrote:
| 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.
| wbl wrote:
| Shit I should talk to my doctor again. Although probably
| for exercises induced things might be a little different.
| maccard wrote:
| Very possibly, although I wouldn't be surprised if the
| advice has changed. Asthma is an inflammation of the
| lungs and the learnings seem to be that any inflammation
| is bad, so we want to prevent inflammation rather than
| respond to it.
|
| Definitely worth a conversation!
| maccard wrote:
| 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.
| spockz wrote:
| For sleeping on their back. Our youngest daughter would
| _not_ sleep on her back. She still sleeps on her tummy with
| arms folded under her. The only way she sleeps otherwise is
| in the car seat when properly exhausted. Put her to bed and
| she will turn around and fall asleep. So what does medicine
| say then?
| vosper wrote:
| Sleeping on the back only matters when they are very
| young. It's for when they don't have the strength to turn
| themselves out of a face-down / suffocating position.
| That's why you practice tummy time (neck/head lifting)
| with an infant. Once they are older they can sleep how
| they like
| Enginerrrd wrote:
| Depends on the kid too. All 3 of my kids could lift their
| head up when they were born. A couple of times I forgot
| all babies aren't like that and picked up a friend's baby
| without adequate support.
| LeonardoTolstoy wrote:
| It says that there is like a 10x risk of SIDS in the
| first four months of life with tummy sleeping.
|
| I don't agree with her on everything, but Emily Oster's
| chapter on SIDS (in the second book I think, Cribsheet) I
| think does a good job outlining the data on it. And my
| brother just had a kid who also would absolutely not
| sleep on his back. Once he could roll he just sleeps on
| his tummy (but once they can roll SIDS is not really an
| issue)
| kqr wrote:
| 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.
| freddie_mercury wrote:
| > 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.
| margalabargala wrote:
| > 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.
| porphyra wrote:
| 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)
| rescripting wrote:
| 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.
| scythe wrote:
| 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.
| randerson wrote:
| And not just alcohol. America is highly medicated.
| Someone who takes sleeping pills for example is unlikely
| to be subconsciously aware of their surroundings.
| svnt wrote:
| I think this might have been the case early on. Now it
| seems the reality is more nuanced.
|
| Now the default discourages bedsharing, but we know and
| can witness personally the many positive effects. The
| warning causes us to be more conscientious about doing it
| if we choose to, and for those who default to obeisance
| they are in their minds making the responsible choice.
|
| Because of the social stigma, those who do bedsharing
| responsibly are not being accurately reflected in the
| data, causing only those careless enough to admit it to
| be captured.
| BobaFloutist wrote:
| Pretty sure Americans drink less than most Europeans.
| treyd wrote:
| 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.
| throwaway173738 wrote:
| 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.
| Enginerrrd wrote:
| 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.
| sarchertech wrote:
| Bed sharing isn't just about SIDS, it's about litterally
| just rolling over and smothering your child (sometimes
| those do get lumped in together, but increasingly they are
| separated if they can be).
|
| If you are overweight, sleep on a standard western style
| mattress, have any sleep disorders, smoke, drink, use
| illegal drugs, or even some prescription medications, you
| are much more likely to smother your infant.
|
| The risk of all sleep related causes of death is around
| 1/1000 in the US, but you can reduce that risk 100x if you
| follow all of the safe sleeping recommendations.
|
| 1/1000 is pretty low but it's higher than the chance of
| your infant dying in a car accident, disease, or any other
| cause of death for full term healthy babies.
|
| My wife (pediatric ER doctor) has had to declare numerous
| babies dead from a parent rolling over and suffocating
| their infant and usually the parents weren't intoxicated at
| the time.
|
| I have 2 kids (and a 3rd on the way). I know how hard it is
| to follow all the safe sleeping recommendations, but the
| risk is real and the cost is so high.
| freddie_mercury wrote:
| The temperature thing is one I always wonder about.
|
| The WHO claims the ideal overnight temperature for sleeping
| is 18 degree (C). I lived in Vietnam for a decade and to a
| rough approximation 0% of the population ever experiences 18
| degrees overnight for sleeping. And I imagine it's not too
| different in much of Thailand, Indonesia, India, etc.
|
| I'm pretty dubious that hundreds of millions, maybe billions,
| are thriving in "suboptimal" overnight temperatures!
|
| Does the African savanna regularly get down to 18c at night,
| such that we'd expect that to be some kind of evolutionary
| equilibrium that just happens to map to (northern) European
| and North American norms?
| gradus_ad wrote:
| Well, hot places do tend to have indolent populations.
| akvadrako wrote:
| Humans can thrive in nonideal situations. I would say too
| ideal is unhealthy.
|
| Plus the effect might be small or something easily adapted
| to.
| 0cf8612b2e1e wrote:
| ...in the nordics you should have them sleep outside...
|
| Is this a joke or are the Nords breeding a race of supermen
| Vikings a la the Fremen?
| abxyz wrote:
| 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...
| andrelaszlo wrote:
| 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?
| ifwinterco wrote:
| 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
| viciousvoxel wrote:
| 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...
| SwtCyber wrote:
| The "hot drinks cause cancer" thing is surprisingly legit
| azepoi wrote:
| Heard this in France too from MD. Link between drinking too
| hot (over 60degC) and oesophagus cancer
| SwtCyber wrote:
| Makes you realize how much of what we think is "settled
| science" is often just what gets repeated in a given language
| or culture
| decimalenough wrote:
| 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.
| hnthrowaway121 wrote:
| > 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.
| edmundsauto wrote:
| Many of these are due to cultural contexts. For example, I
| would trust sushi from 7-11 in Japan over most grocery store
| sushi in the US.
|
| > Western sources suggest that eating sushi while pregnant is
| little short of stabbing yourself in the abdomen with a sharp
| knife, Japanese sources explicitly recommend sushi as a light
| and healthy meal
| pcthrowaway wrote:
| 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
| amai wrote:
| Many doctors just prescribe birth control pills as treatment for
| endometriosis and call it a day.
|
| So much for it being an interesting disease.
| dillydogg wrote:
| To help support the "retrograde menses is incomplete" discussion;
| I was involved in a case where a woman had a bone marrow
| transplant for her CML. She later developed "appendicitis" when
| but when the tissue sample came to the pathologist, the
| appendicitis was actually endometriosis. Even more, the
| endometriosis was XY karyotype, ie derived from the bone marrow
| transplant. We wrote up a case report.
|
| NB - It is a known phenomena in bone marrow transplant recipients
| that the donor DNA can be taken up by host cells by unknown
| mechanisms, so it isn't a guarantee that the endometriosis was
| developed from the transplanted bone marrow.
| SwtCyber wrote:
| It's one thing to know, in theory, that stem cells can end up
| in strange places after transplantation, but to see that play
| out in something as enigmatic as endometriosis really
| underlines how little we know about the underlying mechanisms.
| dillydogg wrote:
| 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.
| SwtCyber wrote:
| The comparison to cancer is honestly kind of chilling. The fact
| that endometriosis lesions pick up the same mutations, adapt to
| evade the immune system, and yet are considered "benign" is such
| a medical blind spot
| echelon wrote:
| 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.
| kjellsbells wrote:
| 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.
| scythe wrote:
| 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.
| placardloop wrote:
| 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.
| Henchman21 wrote:
| 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_.
| liquidise wrote:
| 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 wrote:
| Exactly why weight loss pills are a multibillion dollar
| industry today.
| tekla wrote:
| People want medication to solve their problems, not
| actually try and solve things without paying money for it
| margalabargala wrote:
| 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 wrote:
| 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.
| margalabargala wrote:
| There are a lot of doctors and researchers running
| research arms of large, well funded institutions. Sloan
| Kettering for example.
|
| I'll grant you that that is a low percentage of the total
| US medical research spend. But also, most of the world
| does not have the same profit motive; in most Western
| countries, a cure is categorically cheaper for everyone
| than a chronic illness, because healthcare is paid for by
| taxpayers. And countries besides the US do plenty of
| medical research.
|
| If the hypothesis were true that there exist cures to
| many diseases that simply haven't been explored due to
| profit motive, then I would expect countries without that
| profit motive to have a higher proportion of cures among
| their medical.discoveries than the US. I don't believe
| that is true though.
|
| Basically my point is that the effect you mention likely
| has little actual impact on the larger medical field.
| BobaFloutist wrote:
| There's pretty universally much more demand for doctors
| than supply. And insurance companies, the other major
| power that's, to an upsetting degree, "running the show"
| would love for everyone to be perfectly healthy so they
| can collect premiums and never pay out.
| tbrownaw wrote:
| > _so they can collect premiums and never pay out_
|
| That's not actually a thing. A very high portion of
| premiums always has to be paid out. Not just because the
| regulators said so (IIRC the requirement is a 90% or 95%
| loss ratio?), but because they'd be undercut by a
| competitor _long_ before they got in regulatory trouble.
| majormajor wrote:
| 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.
| renewiltord wrote:
| 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 wrote:
| 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?
| frereubu wrote:
| 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.
| epistasis wrote:
| 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.
| asdf6969 wrote:
| They genuinely don't care. Don't over think it
| dinkumthinkum wrote:
| While I might be sympathetic to what you're saying,
| endometriosis is not a very rare condition.
| troupo wrote:
| > 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 wrote:
| 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 wrote:
| 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.
| troupo wrote:
| Ask women how many of their common maladies still get
| untreated or misdiagnosed.
|
| White[1] males are extremely over represented in medical
| literature and research. And I'm saying it as a white
| male myself.
|
| [1] This actually has ramifications beyond just gender.
| See e.g. https://www.statnews.com/2020/07/21/dermatology-
| faces-reckon...
| dragonwriter wrote:
| > 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.
| tbrownaw wrote:
| > _There 's a bias here, but its not about how common the
| disease is, but who it affects and how._
|
| This worldview requires believing that doctors dgaf about
| their family members.
| ipaddr wrote:
| Most doctors who do this type of medicine wouldn't work
| with family members. Not many fathers, uncles would work
| on their kids, nieces or mothers and not many mothers
| either. You would go to a different doctor if possible.
| tbrownaw wrote:
| "They don't care because it's doesn't affect them
| personally" requires "they don't care about other
| people".
|
| My general impression from half recalling whatever
| stories about new medical discoveries, is that the
| motivation is more often a problem that a family member
| of the researcher has rather than a problem that the
| researcher personally has.
| epistasis wrote:
| 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.
| drewg123 wrote:
| 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.
| Spooky23 wrote:
| 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 wrote:
| > 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 wrote:
| Not only that, but you have red herrings. Going down the
| rabbit hole chasing random anomalies doesn't solve the
| patients problem either!
| NooneAtAll3 wrote:
| what complications are there from CT scan?
|
| asking as someone that had it
| macNchz wrote:
| 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
| smeej wrote:
| 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.
| wbl wrote:
| 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!
| itronitron wrote:
| 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 wrote:
| 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 :)
| BobaFloutist wrote:
| 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?
| Asooka wrote:
| 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.
| GrantMoyer wrote:
| 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.
| ozim wrote:
| "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.
| giantg2 wrote:
| "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.
| KaoruAoiShiho wrote:
| Yep this is something that only AI can solve. Same situation
| applies to education, sales, HR. Human powered bureaucracies
| and systems suck.
| dayofthedaleks wrote:
| Any AI will most certainly reflect the biases of the
| bureaucracies responsible for their creation.
| KaoruAoiShiho wrote:
| Nah AI can easily be programmed to be much more patient
| and investigate edge cases and figure out personalized
| solutions thoroughly and provide bespoke service. This
| problem would be solved, though of course there are other
| issues with biases of the bureaucracies.
| hluska wrote:
| 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.
| KaoruAoiShiho wrote:
| I think OpenAI has plenty of investors...
|
| https://x.com/deedydas/status/1933370776264323164
| nradov wrote:
| OpenAI doesn't lack investment capital. What they still
| don't have is a good source of high quality clinical
| data. And this isn't just a matter of buying access to
| deidentified patient charts from some large health
| system. Most clinical data quality is kind of crap so
| using it directly for model training produces garbage
| output. You need an extensive cleansing and normalization
| pipeline designed by human clinicians who understand the
| data at a deep level.
| KaoruAoiShiho wrote:
| Absolutely true, but is there a system that works
| perfectly that I can use now that has all that that isn't
| AI?
|
| In the absence of such a thing OpenAI is already quite
| good, some theoretical perfect shouldn't be trotted out
| as a counter if it doesn't actually exist.
| majormajor wrote:
| 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 wrote:
| The costs are so low you can easily inference a bit
| longer. The idea that a computer would be as lazy as a
| human is not even close to reality.
| nemomarx wrote:
| Not the cost of running the ai, the cost of potential
| tests and medical treatment if they do find something, I
| think?
| KaoruAoiShiho wrote:
| Nah those make money not cost money (for providers).
| sfn42 wrote:
| You can do an obscene amount of inference for a fraction
| of the cost of an average doctor's appointment.
| snitty wrote:
| >Yep this is something that only AI can solve.
|
| [citation needed]
| tbrownaw wrote:
| > _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 wrote:
| 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 wrote:
| Does "here are the most useful things to find out next"
| really need that complex of a user experience?
| renewiltord wrote:
| 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.
| giantg2 wrote:
| 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.
| cess11 wrote:
| How are you going to make it reliably stop people that
| lie to get into contact with medical professions?
| rincebrain wrote:
| Why does it matter if they do?
|
| I've seen a lot of doctors who insist patients must be
| making up things when they say "but XYZ", and my question
| becomes...so what?
|
| If someone credibly lies to you and gets codeine or
| ritalin or something once or twice...that's not really
| significant, in terms of negative outcomes.
|
| If someone lies to reach a medical professional, then you
| treat them like any other bad customer interaction and
| stop doing business with them after some point.
| renewiltord wrote:
| 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.
| edmundsauto wrote:
| In my experience (arthritis), specialists typically won't
| take direct appointments without a referral. They don't
| want to triage the 90%, and most offices are booked
| weeks-to-months in advance...
| alistairSH wrote:
| IME, it's highly dependent on region and specialty.
|
| I can get into local dermatologists without problem. But
| an endocrinologist takes a referral (because there are so
| few, and they're all fully booked).
| toomuchtodo wrote:
| 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 wrote:
| 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?
| toomuchtodo wrote:
| https://news.ycombinator.com/item?id=42974851
|
| https://github.com/OpenHealthForAll/open-health
| wizzwizz4 wrote:
| Aw, it's next-token prediction. This is not generally
| useful, only a "last resort" research tool.
| baxtr wrote:
| Why "beat"? Why not "augment" or "improve"?
| ipaddr wrote:
| 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.
| paulryanrogers wrote:
| 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.
| matsemann wrote:
| 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.
| refurb wrote:
| 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 wrote:
| > 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.
| BrandoElFollito wrote:
| 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.
| swat535 wrote:
| 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.
| dzink wrote:
| 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.
| CjHuber wrote:
| 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.
| dapper_bison17 wrote:
| 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
| joshuajooste05 wrote:
| My girlfriend has endometriosis, I hadn't really read much about
| it until now, thank you for writing!
|
| I think this is a story too common in women's healthcare.
|
| It's often massively underfunded and underesearched, another
| symptom of the fact our society had not let women into
| STEM/politics for decades, and continues to erect barriers to
| encourage them not too.
|
| I like the fact you spelled out the incentives for PhDs to do so
| at the end ;). Would be great!
| catigula wrote:
| >and continues to erect barriers to encourage them not too
|
| Funny, my experience is the absolute opposite of this claim.
|
| Also, I could be wrong but I'm pretty sure breast cancer is the
| single most well-funded areas of cancer research.
|
| There's a toolbox a certain type of person likes to reach for
| even when the evidence is inconsistent.
| kjkjadksj wrote:
| Well outside of breast and ovarian cancer for obvious
| reasons, most mouse models tend to be male to eliminate the
| variable of the hormone cycle. But if some effect is actually
| influenced by that cycle you just ensured you will never find
| it. I'm also not sure how similar the mouse hormone cycle is
| to humans.
| catigula wrote:
| Completely different argument.
| kjkjadksj wrote:
| It was an example of research on women's health being
| underfunded or underresearched.
| catigula wrote:
| No, it was a non-sequitur argument after having your core
| premise disproven with an extremely common and well-known
| example of women's health being extremely well-funded.
| You even carved out special pleading by trying to exempt
| it.
| vpribish wrote:
| maybe you could presume sincerity and not respond like a
| prick?
| catigula wrote:
| Literally everything I said was completely matter of
| fact. The prick is you.
| VagabundoP wrote:
| Having had someone close go through it with Endo, the pain she'd
| deal with meant she could barely walk 100m and lost 20kg from
| being bed bound and unable to eat. Eventually Endo nearly killed
| this person it was so debilitating and only a hysterectomy
| managed to restore her life back to her, which obviously brought
| on early menopause.
|
| Not all Endo suffers get that bad. But there's just no way of
| knowing if you're going to be one of the unlucky ones.
|
| For QOL if you diagnosed, make some plans. If you want kids ever
| then make that your top priority, because it can effect
| fertility, and being pregnant can help.
|
| Even when its seems like its gone, it might come back.
|
| If your country doesn't have free public health insurance, get it
| and get good coverage, you don't want to be left hanging here.
|
| The operations can really help for a time, but it depends on how
| good the surgeon is. Find a good one that listens to you.
|
| Endo can gum up things and the scar tissue from ops can gum up
| your insides, and its a real messy treatment(laser ablation).
| Ovaries can get calcified etc.
|
| If it gets bad bad - and you'll know what I'm talking about if it
| happens to you or someone you care about- do not put off getting
| a hysterectomy. There is no point in suffering in pain month
| after month and not having a life. If I had to do the last twenty
| years over again I would have counselled her to get the
| hysterectomy when she couldn't walk down the stairs without pain,
| after multiple hormone treatments and ops.
| Llamamoe wrote:
| In the hope that someone finds it useful: I have no idea how
| likely it is to replicate, but there's a publication linking
| Fusobacterium infiltration of endometrial tissue with the
| development of endometriosis:
| https://www.science.org/doi/10.1126/scitranslmed.add1531
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