Re: Endometriosis


That ear was indeed haunting.

Posted by: Moby Hick | Link to this comment | 04-29-21 6:39 AM
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I took the post down for a moment to add one more link, but now it's back up, and you couldn't even say "where'd it go?" because it was gone.

Posted by: heebie-geebie | Link to this comment | 04-29-21 6:46 AM
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Seriously, I was about to. But I thought it was a browser cache thing.

Posted by: Moby Hick | Link to this comment | 04-29-21 6:50 AM
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And then when we find initial testable stuff, we overcorrect and overmedicalize, because this--

Now, researchers are developing a simple test to screen for genetic markers of endometriosis in menstrual blood and return a near-instant diagnosis.

--relying on a genetic marker, if adopted as a routine test with nothing further available, sounds like the route to helping some people while disease-mongering in many others. (Not helped by the "it could also help doctors screen for [grab bag of conditions, not all necessarily symptomatic]".)

Posted by: Minivet | Link to this comment | 04-29-21 7:40 AM
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Male gynecologists not knowing about a menstrual cup, or being interested in using menstrual blood for data collection* is astounding. And infuriating. How many years of health have been lost because of insufficiently empathetic and curious privileged medical workers?

* Although: this is weirdly opposite from the usual sort of "dastardly scientists/evil megacorps will stop at nothing to collect our most intimate data" stories. Collect enough data but not too much, and store it responsibly.

Posted by: dalriata | Link to this comment | 04-29-21 7:44 AM
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Sure, everybody wants more male attention to menstruation, but when Ted Cruz wants a database to track that only those with a uterus can play girls field hockey, the parents glare until he leaves the high school locker room.

Posted by: Moby Hick | Link to this comment | 04-29-21 8:31 AM
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I've seen a bunch of (research not clinical) talks where the diagnostic possibilities of urine are breathlessly extolled. Also a bunch detailing the exhaustive hunt for elusive bloodborne markers. But not any talking about a noninvasive source of blood rich in additional cells.

Things that make you go hmm.

Posted by: lw | Link to this comment | 04-29-21 8:56 AM
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I had essentially the same infuriated reaction as Heebie.

Posted by: J, Robot | Link to this comment | 04-29-21 12:25 PM
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So many thoughts about this but no time to write them! Later, maybe. Short - why mad about the framing? Badass researcher turns to neglected area? Because she's got a personal stake?

Posted by: ydnew | Link to this comment | 04-30-21 3:28 AM
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I'm not exactly mad about the framing. The mild tone just harnessed my anger at the patriarchy more than a heavy-handed tone does. But the anger is squarely directed at the patriarchal negligence of the study of endometriosis over the past century.

Posted by: heebie-geebie | Link to this comment | 04-30-21 6:01 AM
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Same, I'm mad at the medical establishment not the reporter.

Posted by: J, Robot | Link to this comment | 04-30-21 8:58 AM
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The second link -- to the December 2020 article -- is also infuriating! As heebie points out, assuming that daily sunscreen use means an intention to suntan is nonsensical. My mother and her friends -- mostly elderly Korean ladies who live in Southern California -- never, ever miss a day of sunblock, and trust me, it's not because they plan to go a tanning salon later.

I was thinking about the absurdity of this, when I realized that the underlying study only included white women in their survey, and the NYT decided to omit the racial qualifier. Holy shit, NYT, white women are not the only type of women! Also, when you're talking about who uses sunscreen and why, and the impact of UV exposure on your body, the race and skin color of the study subjects is kind of important.

Posted by: jms | Link to this comment | 04-30-21 9:42 AM
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When men use sunscreen, it doesn't suggest an intention to sunbathe, because on the veldt, Fred Flinstone's car didn't necessarily protect him from the harsh summer rays during his commute to the paleo office.

Posted by: heebie-geebie | Link to this comment | 04-30-21 10:09 AM
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Honestly, I don't wear sunscreen unless I'm at the beach or a pool or similar.

Posted by: Moby Hick | Link to this comment | 04-30-21 10:12 AM
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I wear sunscreen like an elderly Korean lady in southern California. And probably a similar big hat.

Posted by: heebie-geebie | Link to this comment | 04-30-21 10:46 AM
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But Whitney Houston is every woman, not you.

Posted by: Moby Hick | Link to this comment | 04-30-21 10:53 AM
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She's not every woman if she's not me, and I'm Chaka Khan's every woman.

Posted by: heebie-geebie | Link to this comment | 04-30-21 10:55 AM
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And probably a similar big hat.

I'm so sorry.

Posted by: jms | Link to this comment | 04-30-21 11:19 AM
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i treasure 18.

my longtime devotion to substantial, daily sunscreen on face, neck-upper chest & back of hands has kept pace with my newfound devotion to long swims in the bay, so that my complexion remains palely radiant while my shoulders, back and hilariously the backs of my legs are shifting to golden.

Posted by: dairy queen | Link to this comment | 04-30-21 11:46 AM
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in other dispatches from being a (young) woman -

i just ... it never ends.

Posted by: dairy queen | Link to this comment | 04-30-21 2:03 PM
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20 just awful

Posted by: Barry Freed | Link to this comment | 04-30-21 5:59 PM
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OK, more thoughts. I actually think it's pretty amazing that a female researcher has accrued the power and connections to drive a coordinated, multisite, interdisciplinary effort on an under-researched topic. I guess I'm at "glass half full." It is (of course) depressing that a cause of chronic pain (and lost work and infertility and all kinds of quality of life issues) has gotten no attention and there is no easy diagnosis or treatment. That said, perhaps this will prove to be low-hanging fruit with the best and brightest working on it. It seems like it should be, for what it's worth: physical manifestation, easy to deliver localized therapeutics, relatively large and easily accessible affected populations.

lw, I think urine is actually less good than other excretions. Unfortunately, people get hung up on urine because it's easier to collect and somewhat more pleasant as bodily fluids go. However, given metabolism pathways, a lot of "useful" analytes just won't be present. You've got sputum (from lung), semen, urine, feces, blood, and probably others I'm not thinking of (tears?) that could be used for diagnostics. I suspect feces will end up being fairly useful, but the "ick" factor for patients to collect samples is a lot higher. That might be true for menstrual blood, too, honestly.

Posted by: ydnew | Link to this comment | 05- 1-21 3:57 AM
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Re: sunscreen, the conclusions are bizarre, and the most shocking omission to me is that sunscreens contained (and probably still do to some extent) likely endocrine disruptors. So, hey, researchers, maybe look at that? Severe sunburn has long been linked to melanoma risk.

Want to bet endometriosis has multiple triggers and causes and that we're going to studiously ignore anything environmental? And possibly, when we find genetic markers, it will mean we ignore a bunch of people in favor of white women with resources to be tested, which will in turn, maintain a homogenous pool of samples and limit what we could understand about variability of genetic markers when symptoms are relatively easy to diagnose? I'd put a lot of money there.

Posted by: ydnew | Link to this comment | 05- 1-21 4:08 AM
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Oops, removed a sentence. We understand the proposed mechanism of sunburn and melanoma pretty well, but waving your hands at "inflammation" at this point is starting to be a trite explanation that people give when they don't really understand something. (I do believe inflammation is really important medically and we need to learn more about short and long-term inflammation and its effects, but it's getting a bit silly.)

Posted by: ydnew | Link to this comment | 05- 1-21 4:11 AM
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We did some knee-stuff about inflammation. Didn't have very much data, but people are so focused on a mechanical process.

Posted by: Moby Hick | Link to this comment | 05- 1-21 7:43 AM
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