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.
It must be in combination with one or more of the intersex conditions, yes?
I just wrote up thread about a recurring chat between my wife and I all about what if Men got this disease... the law would change quickly!
I don’t think this is enough to affect funding.
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.
On the plus side, IVF works pretty well for many women with endometriosis. IVF patients with endo have only somewhat worse stats than other IVF patients.
The 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.
What's worse is that there are countless stories of women being denied care and treatment for this condition. It goes undiagnosed for years. Yet it's known to be debilitating in some cases. That's outside the bounds of normalcy and isn't made any better by hypothetical equal treatment.
And if you do, I hope for those around you, that you never say such an awful thing to them.
But can we please avoid dragging men through the mud in matters they have no awareness or influence on? Why must a top-level comment about endometriosis, a disease that affects only women, implicate men in anyway? What makes you feel that men are fine with watching their female kin (or any women) suffer from any of those? Why would men like me even be reading this article if we aren't open to the experience of the others? Let's consider the fact that prostrate and testicular cancers don't receive anywhere near as much attention as breast and ovarian cancer. So the top comment is rhetorical and objectively false. Imagine if a man you know gets prostrate cancer and someone comments that there would be better treatment for it affected women too. How would you feel?
I hate saying this here on the comment section about an important medical condition. Can we discuss women's issues objectively without looking for ways to blame men somehow? Why such hostility against men? I see this far too often and on far too many random topics - it's disheartening and depressing. Look at the way the discussion thread progressed. The top comment that mentions men unfavorably and unreasonably is upvoted and defended, while the opposing views are passionately argued against and even flagged. This is actually a recurring and unhealthy pattern on HN. Expressing male perspective is an easy way to get flagged - even if no hostility is intended (mods please note). Is this how we're going to achieve awareness on gender-specific issues and gender parity?
Also, I guess I didn’t state my gender anywhere (I did not think it would be so relevant! Apologies for not realizing this), but I am a man. So I guess I expressed a “male perspective”. Hopefully that brings some joy to your day.
Sarcasm aside, I do think there may be some misunderstanding about how funding and advertising works for disease research. I am by no means an expert, but have found myself deeply embedded in this area for a while.
I’d be happy to talk with you more about these issues, if you’d like to drop a way for me to get in touch with you on signal, matrix, email or phone.
Now, I did consider the possibility that you are not a woman. But that doesn't change the outcome, and neither does your sarcasm. People showing biases against their own kind is not unusual and that doesn't provide the missing justification. People sometimes aim for the easiest target and sometimes it's their own kind. Men showing bias against men is still bias and it's still not justified. Your 'male perspective' hardly invalidates those of the others.
And no, I don't want to discuss anything in private since it's hard for others to see the bias or point out any issues. And I don't agree with your argument on funding and advertising, since I have been at the receiving end of it in an extreme manner. You can quote as much technicality as you want, but that doesn't invalidate the fact that prejudices cause harm. Unfortunately, the modern society is oblivious of the boundary between empowerment and prejudice. I'm not against women in anyway and I sincerely wish for their well being too. All those problems can be solved cooperatively and without this hostility and the us-vs-them mentality. Instead, this sort of negative reinforcement will only splinter and harm the society in the long run. Reverse of sexism is still sexism, and it achieves nothing.
Please don't comment like this on HN, no matter what you're replying to. It's not what HN is for and it destroys what it is for.
That progress has happened with it doesn't mean much to things like endometriosis, which has a mean time to diagnosis of ~a decade, a point made in TFA. People commonly suffer undiagnosed with it for ten years due to a collective failure. Finding a cure might be very difficult, but fairly rapid diagnosis really shouldn't be, it's not like Alzheimer's.
The numbers presented are stark: "Yet, it stands almost entirely alone in terms of how little funding the condition receives relative to the absolute number of lives it irrevocably alters for the worse: 10% of women (or 190 million) worldwide, with only $29M earmarked for them."
That's really bad. Like, really bad. It's not surprising that women might get very mad about this state of affairs.
Please don't comment like this on HN, no matter what you're replying to. It's not what HN is for and it destroys what it is for.
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".
And of these more painful conditions the research is... Just as lacking. I do get the desperation for... Something. Anything.
Actually Covid saw the biggest research boost - my own is seen as a good control for long covid. A number of autoimmune conditions got similar increased interest. Right up until a political group decided covid research was a nice target.
(I've been in pain for 2/3rds of my life. Pain generally described as exceeding childbirth. There is never a lull. There is no treatment that works.)
When I had tonsillitis, the pain was so intense and so persistent until the 3rd day of antibiotics, I was tempted to just throw myself off a bridge to make it stop. Had I been under the impression there was no way to make it stop in a few days, I suspect I would have.
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.
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.
Easy to say, harder to do. The will to live is probably stronger than you realise. I experienced a short 2 week painful illness and felt similar to you. I later experienced the same thing for 2 years. You adapt and learn to cope.
I wish we would stop turning everything into a competition. As a man with a similar 'tricky' condition I can confirm the medical profession is generally shit with anything tricky regardless of your sex. I have experienced the exact same fight for treatment and investigation that I often read of women experiencing.
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 autoimmune disorders – 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.
I pointed out her history (or hystery, heh) and the kinda obvious gluey, webby bits in the pictures (they're quite visible once you look at enough of them).
Then I grilled him on which of the then-three brands were on the market and which were had on hand. Dude acted like he was just yanking a bad video card on a Friday afternoon, which I found less than optimal.
I was not surprised when, post-surgery, the rest of the staff attempted to hustle us out the door. I had abort their well-rehearsed ejection procedure to get aftercare instructions ... and to make sure the scripts had already been called in ... and then to get the follow-up appointment cemented and the "oh shit something has gone wrong" post-surgical emergency contact information. I suppose in the future they will have a kind of water slide from the recovery room into the parking lot, and they just will aim for the open passenger-side door.
Your water slide to the parking lot is an apt description—-I can 100% believe people wanting such a thing.
Pregnancy relieves the symptoms but is not a cure. But surely you'd have to consider lower fertility has something to do with the increase in endometriosis.
[0] https://aeon.co/essays/why-pregnancy-is-a-biological-war-bet...
...or maybe it's because of that war it works as well as it does? Maybe it takes agents in opposition to evolve enough redundancies and contingency plans to get things working?
Before Mendel, at least some people hypothesised there must be some sort of "battle of the germ cell" that powered evolution, because unimportant functions -- even when they aren't actively detrimental -- tend to be forced nearly out of existence.[1] Even our bodies, miracles of cooperation, evolve to some degree under antagonism.
Thanks for referencing that article, though. I was going to but now I don't have to. Everyone should read it. Utterly fascinating.
[1]: The example that comes to mind are the femurs of whales. They are absolutely tiny. Much smaller than can reasonably explained by them being a problem for the whale itself.
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.
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.
(And if you have a country filter/hint set on your search engine of choice, you disable or change it appropriately.)
* 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.
- 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.)
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.
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)
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.
(that said, as a new dad, I'm also deathly afraid of SIDS so I still stuck by the American recommendations, sleep be darned)
The WHO claims the ideal overnight temperature for sleeping is 18 degree (C). I lived in Vietnam for a decade and to a rough approximation 0% of the population ever experiences 18 degrees overnight for sleeping. And I imagine it's not too different in much of Thailand, Indonesia, India, etc.
I'm pretty dubious that hundreds of millions, maybe billions, are thriving in "suboptimal" overnight temperatures!
Does the African savanna regularly get down to 18c at night, such that we'd expect that to be some kind of evolutionary equilibrium that just happens to map to (northern) European and North American norms?
Plus the effect might be small or something easily adapted to.
Full background: https://www.reddit.com/r/Ureaplasma/comments/qavqf1/the_urea...
Is this another example of culturally specific health "facts" or have I just missed something?
In european/North American countries where people normally drink out of ceramic mugs, people generally end up drinking hot drinks at a lower temperature
https://www.mskcc.org/news/burning-issue-truth-about-hot-dri...
So much for it being an interesting disease.
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.
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.
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.
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.
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.
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.
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.
twodave•11h ago
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•11h ago