These complications sound a lot worse.
If you go to a Catholic hospital, you can get a LEEP of Faith.
Protestants have hospitals too.
"silencing the genital connection to the brain" WTF?
The "genital connection to the brain" is the pudendal nerve. This is Wakefield-level stuff.
You might be totally correct on the anatomy, but being anonymous and comparing this doctor to Andrew Wakefield without going into more detail makes it seem like you have an axe to grind.
5: I couldn't work out the Wakefield reference. I guess your theory makes more sense than comparing the doctor to the old Red Sox knuckleballer, Tim Wakefield.
I think the Wakefield comparison is a bit much because it implies there is fraud going on. But there is a similarity in that you have a very common medical procedure (vaccination/LEEP) that in a very small minority of cases is closely followed by a very distressing syndrome (autism/sexual dysfunction) whose cause is not fully understood, and which also occurs quite a lot in people who haven't just had the procedure, and there isn't a very clear causal pathway for the procedure to lead to the syndrome (the article mentions the gynaecologist noting that Sasha didn't have any visible damage from the LEEP; also heebie's point about how it's a bit odd that non-visible nerve damage to an organ can have more of an effect than complete removal of the entire organ).
And, of course, just as with the Wakefield case, there are Facebook groups for patients, there are dark suspicions of a conspiracy of silence in the medical profession, and there are people with money to be made - it's really quite noticeable that the great Dr Irwin Goldstein gets an entirely positive writeup that takes up most of the second half of the article, and that, while there are no links to any of the research cited, there is a link to the business webpage of said Dr Irwin Goldstein, should you wish to book an appointment and throw a few grand his way.
(Is it really three years since the Empty Nose Syndrome discussion? http://www.unfogged.com/archives/comments_15334.html)
I'm surprised that Cosmo didn't consider the possibility that these women are simply suffering the effects of Mercury having been in Virgo for the last few months, which (the magazine assures us) can leave you feeling completely drained. https://www.cosmopolitan.com/lifestyle/a29021080/mercury-in-libra/
And, of course, just as with the Wakefield case, there are Facebook groups for patients, there are dark suspicions of a conspiracy of silence in the medical profession, and there are people with money to be made
There are significantly more societal reasons for women to be a bit paranoid when it comes to whether or not their doctor gives a shit about their sexual functioning than there is for parents who are panicking that thoroughly well-understood science of vaccines is causing autism in their kids.
Also, a grown woman experiencing an abrupt change in sexual functioning following a doctor tinkering under her hood is more black and white than a kid showing symptoms of a very poorly understood disease with a million factors during a stretch of childhood involving a lot of well-visits to doctors.
9: women are the worst, right!? What dummies!
11: what? That article's by a man! (I assume. Someone called 'Jake' anyway.)
3: They go by faith alone, so don't have surgery.
I find these kind of things (I think Chronic Lyme is a better example of the same phenomenon than anti-vax, but both probably skirt the analogy ban) tricky to talk about, because I think all the following things are true (and intersect with each other in very complicated ways):
1) The medical profession does a terrible job listening to patients and taking women's symptoms seriously. Some of this is sexism, some of it is systemic problems with understaffing and dysfunctional healthcare.
2) Most patients want doctors to do something even if the problem isn't understood and interventions are not likely to help and may well hurt. If a doctor won't make up something to do, then people feel like the doctor doesn't care.
3) The internet has resulted in many online communities centered around specific crackpot diagnoses (which may often be related to real symptoms, but connect the symptoms to some specific crackpot science).
My understanding of chronic Lyme is that the symptoms are real (aside from the 27% crazification factor that latches onto controversial diagnoses) and likely to be autoimmune, and the doctors are ought to be saying "Antibiotics won't help, the initial outbreak is gone" and instead patients are left feeling like they were told, "You're crazy, you don't have Lyme disease". IMO, the burden of communication lies on the doctor, and so I blame the doctor.
This is not an anology. This is a separate conversation I happen to be having simultaneously.
Sorry 15 was me. I think I blame both doctors and patients. Obviously doctors should try to communicate better and they're the trained professionals so I certainly see your point, but it's really not clear to me that there's anything doctors could say that wouldn't lead to the exact same reaction in a lot of patients (see my point 2). Most problems doctors just can't do anything about, and that's really hard to hear.
Point 2 is a fair point. At first I thought you directed me to comment 2, which is a different point altogether.
I would be interested to know how much training doctors normally get on communication. They are (part time) professional science communicators, after all, just as much as (say) Carl Zimmer is, and communicating science to non-scientists in a way that they can understand and act on is a skill that can be taught.
16. The "chronic Lyme" symptoms are now generally thought to be real in the sense that systemic damage caused by the virus doesn't always go away, even though the virus itself isn't there any more.
19. Surgeons are generally considered to be great communicators if they say as many as five words to a patient.
2) Most patients want doctors to do something even if the problem isn't understood and interventions are not likely to help and may well hurt. If a doctor won't make up something to do, then people feel like the doctor doesn't care.
3) The internet has resulted in many online communities centered around specific crackpot diagnoses (which may often be related to real symptoms, but connect the symptoms to some specific crackpot science).
Related to this, a doctor may say that there is something that may help, but it will be expensive (because insurance doesn't agree that it may help, or just because it's expensive), and then people think "OK, I can't afford the traditional medical option, so I have to figure out which alternative medicine to use"
@10
"There are significantly more societal reasons for women to be a bit paranoid when it comes to whether or not their doctor gives a shit about their sexual functioning"
What societal reasons? 57% of practicing OB-GYNs are female.
oh, hey, I haven't even got read the thread, but I almost got that surgery once! I literally got a letter from my managed medical group that said "present yourself for this surgery," before anyone every talked about it with me, and being kind of dumb, I didn't question it, and was literally in the operating theater when the luckily female doctor had luckily just been to a conference about cervical cancer, etc., and started engaging me in a conversation about risks and benefits, and I was like ... why don't I wait and see if this problem just clears up on its own. Later I went to a different ob-gyn who was all, this wasn't cancer, it wasn't even pre-cancer, it would have been ridiculous to respond to this with surgery. It is a good thing I didn't have it.
What societal reasons? 57% of practicing OB-GYNs are female.
This comment seems pretty far below normal Unfogged comment standards. To state the obvious, if the doctor's gender is the decisive factor, then saying that 43% of doctors should properly elicit paranoia from women is a pretty damning statement about society. Obviously that's a silly thing to say, but no more silly than saying that women can't be a problem for women, or that women aren't vital parts of a patriarchal society at large.
(On topic, Lisa Bloom -- Gloria Allred's daughter -- is a noted supporter of abused women and Harvey Weinstein.)
Anyway, there's a lot of literature on this topic if you want to look around. Google will lead you here or here or here or here or here or here or here or here or, well, you get the idea.
20.1 sounds very plausible. My mom has all sorts of awful autoimmune problems that are plausibly a result of having had measles as a child. Unfortunately the upshot would be that you can't do much about it other than to try to prevent people from contracting Lyme disease in the first place or getting people to take a vaccine. The people who already have these problems are just screwed.
Low-quality sarcastic commenting aside, it's interesting if the tendency to ignore women's symptoms does persist in a world where A) most doctors are women and B) most patients are women, men tending to avoid the doctor. Why do women doctors still pay less attention to women patients?
We're all part of the patriarchy? Unconscious bias?
I mean, if men tend to avoid the doctor, then it's logical for a doctor to take male patients more seriously because if they've got as far as the waiting room there must be something really wrong with them. But the one sort of doctor this shouldn't apply to is, surely, gynaecologists. (I mean, yes, men definitely also tend to avoid visiting gynaecologists but that is for a different reason.)
A man who has got as far as the gynaecologists waiting room probably does have something really wrong with him but that something is likely to be "dyslexia".
A man who, beyond the age of 26, finds himself in a gynecologist's waiting room can count himself a failure.
@28
Spare me the po-faced sanctimony. Comments like 11 and 31 are typical around here and far more "low-effort" than anything I wrote.
Arguments that doctors don't take the concerns of a group seriously are generally framed as resulting from an insufficient presence of members of the group in the medical profession, leading to a profession-wide failure of empathy. When OB-GYNs are 57% female overall, and 85% of OB-GYNs residents are female, that argument fails.
The article was woo. A long-read version of "Doctors hate her! One weird trick for ..."
That some are so invested in the article should prompt an analysis of the rhetoric and framing that made it so appealing.
Oh Jesus, chronic Lyme. A dear friend has chronic Lyme. Co-diagnosed with babesiosis or some other tick-bourne illness by a "Lyme-Literate MD." These assholes have KILLED people. I have no doubt that people suffer after effects of Lyme infection (which is bacterial and gets treated with antibiotics) because immune systems are weird and complicated. There's a recognized syndrome called Post-Treatment Lyme Disease Syndrome, which refers to this issue. It is bad, but a totally legit thing, studied but not well-understood.
However, the chronic Lyme disease thing seems to come about in patients who have never been diagnosed with Lyme disease. There is a CDC-approved test. It measures immune response, not actual bacteria, so it doesn't always show positive early in infection. There's also a test which is not FDA-approved that uses a technology called a Western Blot. Scammers claim that this is a more accurate and sensitive test, but some clever researchers sent samples from nominally healthy, asymptomatic people to two of these labs and got some crazy high "positive" test rate (57%?). So, that's a problem. Additionally, there's a network of "Lyme Literate MDs" who get business by word of mouth (because they'd probably lose their licenses and possibly go to jail) who sell these people (who feel ill and are tired and have seen many doctors!) an average of $30,000 in teatment, some covered by insurance much not, that includes supplements, long-course antibiotics (sometimes by IV, some even install PICC lines!). They even tell patients about the Herxheimer reaction and tell them they'll feel worse at first, but it means treatment is working (and pain is weakness leaving the body). It really, really sucks that there's nothing modern medicine can do to solve whatever the real problem is (hint: not "chronic Lyme), but this is gut-wrenching to watch.
Also, I thought maybe I was an asshole on this topic after the Slate article, but maybe not:
https://www.thecut.com/2019/07/what-happens-when-lyme-disease-becomes-an-identity.html
36.2: No, that's not the usual explanation - the explanation is that people don't take women's medical concerns seriously. Female doctors may or may not take female patient's concerns more seriously than make ones (not sure about this - anecdotally, my female gyns have been more "suck it up; it's not that bad" variety), but I don't think you can seriously argue that women's health problems are taken more seriously in gynecology than in other fields because there are more female docs.
Nope is being a twerp generally, but I was sympathetic to the general critique of the article. Without some kind of stats, anecdotes saying "I had a specific procedure and then I had a not obviously causally connected side effect" don't do much for me. The symptoms the women in the article are having can be perfectly real without being connected to the procedure, and if the procedure is very common and the side effect isn't, it's hard to rule out coincidence.
And the nerve damage explanation seems odd to me. That is, the women in the article aren't complaining of numbness, they're complaining of inability to orgasm. God knows I don't know what I'm talking about, but if there is an understood set of nerves that control orgasm but not sensation otherwise, that wasn't made clear in the article.
Hrm. Heebie's question makes me wonder if the problem, whatever it is, and if there is one, has to do with how the procedure is done rather than the removal of cells themselves. (General vs local anaesthetic?)
As to why doctors aren't taking it seriously -- probably overdetermined, but probably also that chronic symptoms without obvious causes are kind of a bitch to figure out.
I didn't read the article past the first couple of graphs. I figured if I was supposed to know what it said, I'd have been born when a cervix or an attention span.
41.2. Remember "chronic fatique syndrome"? Lot of people have it or claim to have it. People who reported having it were usually laughed at by doctors, or accused of being nuts. But, it's now a recognized disease with several alternate names ("myalgic encephalomyelitis", "systemic exertion intolerance"). They still have no actual clue what it is or what causes it. The experts agree it's real, though: CDC, WebMD, Mayo, etc.
Nobody gets the marthambles any more, though.
Wasn't fibromyalgia one of those diseases that primarily affected women and whose existence was doubted?
There's no official recognition that premature ejaculation is a disease, but I hear that's coming quickly.
My niece has CFS, which the medical profession is taking seriously and treating in a specialist unit. But it seems there's only so much they can do, because although they recognise that it's real enough they haven't a scoobie what causes it, so they're basically limited to offering her ways of making it easier to live with. Which is fine as far as it goes, but it doesn't go very far.
You know that's stolen, right?
I'm sure it's public domain by now.
There's also a thing I don't understand about how it's really important to people that there be a recognized name and sometimes even opinions on what the name is. When it's a diagnosis of exclusion without a known cause, any name is just a fancy word for "shrug." (I have IBS, which is such a thing, but having a name for it isn't something I've ever found helpful.). CFS and Fibromyalgia are almost certainly not referring to a single cause or phenomenon and we don't know what they are whether they have a fancy sounding name or not. But having a name is really important to a lot of patients and I don't feel like I understand it fully.
There is a CDC-approved test. It measures immune response, not actual bacteria, so it doesn't always show positive early in infection. There's also a test which is not FDA-approved that uses a technology called a Western Blot. Scammers claim that this is a more accurate and sensitive test, but some clever researchers sent samples from nominally healthy, asymptomatic people to two of these labs and got some crazy high "positive" test rate (57%?).
From what I can tell the Western blot also measures immune response. It's probably more sensitive but it is definitely not more accurate. Western blots are inherently subject to false positives and are barely quantifiable (it's a matter of "is this band there or not?").
For serology they are even more susceptible to false positives because antibodies tend to stick to things non-specifically. You see something and have to remember that there's a good chance it's a false positive.
Finally, I would guess that the scammers, if they aren't simply making up results, are seeing nonspecific positive results for IgM antibody, which is VERY susceptible to false positives, and claiming it's a positive, even though specific antibody against a particular infection should only be seen early in the infection because the cells that produce it later switch to producing the more useful IgG antibody.
51. "Idiopathic" is always a good word to use in a diagnosis. Not to mention "-itis" added to any latinization of the name of a human organ. "Sinitus," "Gastritis," etc. Sounds cooler than "patient's tummy hurts."
Edit: should say "specific IgM antibody against a particular infection should only be seen early in the infection"
51: I was a little relieved to get a diagnosis of ADHD for Pokey, just because the earlier diagnoses - depression and oppositional-defiant-disorder - were much more significantly unusual for a six year old when he got them.
But that pales to how relieved I am that medication has been so spectacularly transformative. His appetite is suppressed, so we withhold his morning dose until after breakfast, and on the weekend, sometimes he's been up for a few hours before getting his meds, and it's such a wonderful opportunity to remember how disastrous daily life was before he was medicated, and how amazing modern science is. BETTER LIVING THROUGH CHEMISTRY INDEED.
For magic, Unfoggetarian: "Pause endlessly, then go in" (9), consists in this, the true naming of a thing.
Spare me the po-faced sanctimony. Comments like 11 and 31 are typical around here and far more "low-effort" than anything I wrote.
I don't know why I'm engaging in this, but comments 11 and 31 are:
1. Not anonymous.
2. Building on years and years of chatting here with ajay and Ned, enough so that I can confidently say they can correctly read my tone,
3. and that tone is kidding-on-the-square, maybe lightly annoyed, in 11, and basically "‾\_(ツ)_/‾" in 31, ie "I agree, obviously these are the conventional explanations but I have no idea if there's a better answer."
11 and 31 are low effort insofar as conversational comments are low effort. They are not low effort in the same way as 26. Comment 26 is written based in either a faux, or an authentically simplistic understanding of gender issues. It is simplistic to the point where it is exasperating to engage in supplying the missing complexities. Hence we're all annoyed.
51: I think it makes more sense if you tie it into the history of dismissing complaints as not really there or "all in your head", perhaps with the vague hope that if it has a name, then they might have a clue about how to treat it or avoid triggering it. Or sometimes it's just nice to have confirmation, I suppose, that there is something wrong even if it's been hard to identify or presented with weird symptoms.
Especially if you've internalized some of the dismissals of your experiences from childhood on up. People can end up in a place where they madly second-guess what they're experiencing, and self-dismiss.
52/54: I was hoping you were around for this one! The fancy test is a Western measures a bunch of antibodies (6? It's been a while since I read up), and the CDC-approved is an ELISA with confirmatory Western for IgM and?or? IgG, so there's higher chance of a nonspecific "positive." Here's one nontechnical and one slightly technical link (with references).
https://www.nytimes.com/2005/08/23/health/policy/unproved-lyme-disease-tests-prompt-warnings.html
https://sciencebasedmedicine.org/lyme-testing/
I think I have a link with details/blot images somewhere but not ar hand.
You can dismiss yourself after fifteen minutes if the professor doesn't show up.
59: Yes, plus, if my own low-key-not-a-problem experience is at all common, lots of symptoms can be nearly anything. Exhausted mom of toddler comes in complaining of fatigue, noticing a pounding pulse (that we can't get to replicate in the doctor's office.) Exhausted mom of toddler seems relatively cheerful, upbeat, training for a half marathon PR, has a job, healthy spousal relationship. Exhausted mom of toddler is obviously fit so must just be tired. Doctor suggests more sleep and self-care but runs bloodwork anyway. Exhausted mom of toddler is found to be severely anemic. Cause unknown. Fixed with iron pills.
I kept thinking what if it had been actually something hard to figure out?
Training for a half marathon is associated with fucking up my ankle.
Your ankle must be pretty fucked, considering how many half-marathons there are.
Exhausted mom of toddler is found to be severely anemic. Cause unknown. Fixed with iron pills.
It's a little hard for me to know for sure, but I think I am significantly less bone-weary since I had the hysterectomy and stopped having periods. I definitely had chronic, significant anemia, and found iron pills problematic, although I took them anyway.
Obviously this is a thread about how terrible we are at self-diagnosing, and how many confounding factors there are, and I spent the 6 years prior to my hysterectomy mostly pregnant, and having babies, and now my youngest is almost 5. Lots of reasons to have more energy.
BUT STILL.
It's important to train for a second half marathon if you train for a first one. That way, my ankle thinks if you as having trained for a marathon and can finally heal.
Also, it's important to train for the second half of a marathon if you train for the first half.
58, 59: But some big fancy words *do* mean it's all in your head, so I'm not sure why a name means the doctor isn't saying that.
62: Named diagnoses of exclusion exactly mean that doctors have given up and aren't going to look for something else going on. So in a situation like that you're much better off without a diagnosis rather than them saying it's chronic fatigue syndrome.
I suppose the point is that a name says "we acknowledge that there are lots of other people in the same boat as you" and that this is a comfort to normal people who weren't raised Calvinist.
69: Hearing "you're not crazy, there is a thing" I'm sure helps.
But some big fancy words *do* mean it's all in your head, so I'm not sure why a name means the doctor isn't saying that.
I think that when people (correctly or otherwise) interpret the big fancy words to mean it's all in their head, then it's no longer a comfort in the same way.
But it could just mean *all of you* are crazy. The name just refers to the symptoms which you already know you had, and to the lack of a known cause.
My therapist had me read a book on self-compassion and there was a lot about "Common humanity: Self-compassion also involves recognizing that suffering and personal failure is part of the shared human experience." And I was all, but why would I find it a comfort that I'm like ALL THOSE REPROBATES? So I'm sure this all says a lot more about me than it says about how doctors should explain symptoms to patients.
That's hilarious, you elitist elect. FTFY
Among other things, a name gives you a community. It could just be a community of people with whom to say, "ugh, I know, right?", but it could also be a community with whom to share useful advice about managing the problem, to advocate for accommodations and research into treatment. And related to accommodations, when other people know the name it's easier to shorthand the experience, to communicate efficiently about what you need.
It's mostly just easier to get insurance to pay for things if you don't try to argue that only you can get this condition.
43:"Nobody gets the marthambles any more, though"
Hooray for obscure Richard Patrick Russ reference! Really useful as unique user name.
Further to 76, it can also give you an idea of what to expect with a mystery illness. Is it chronic? Is it progressive? Can it spontaneously resolve? How commonly? Are there linked conditions to look for? I think that bit of knowledge, even if it's bad, can be more comforting than uncertainty.
I had not realized the doctrine of predestination had such specific impacts on ordinary life for Calvinists.
I literally got a letter from my managed medical group that said "present yourself for this surgery," before anyone every talked about it with me, and being kind of dumb, I didn't question it, and was literally in the operating theater when the luckily female doctor had luckily just been to a conference about cervical cancer, etc., and started engaging me in a conversation about risks and benefits, and I was like ... why don't I wait and see if this problem just clears up on its own.
It's pretty amazing how wildly differently insurance companies behave based on near-random factors*. So often when it comes time for surgery that's not 100%-obviously urgent, they deny coverage unless and until it's formally contested and doctors and patients have shouted themselves hoarse... yet here, it's "time for you to have this surgery you didn't know about and whose benefits are debatable!"
*In the past I would have said "schizophrenic" - what's a better term?
Total depravity is a hell of a doctrine. It's definitely a struggle for me to think of "being human" as a good thing.
Anecdotally, I had a LEEP once, and something similar to but much more invasive than a LEEP another time, though I didn't have poor outcomes from either. Both came after multiple abnormal paps and colposcopies, so I felt like they were probably necessary, but neither was very much fun. My understanding is that Pap smears have since become more accurate, and less likely to deliver false positives, which is also reassuring (as is being older, and monogamous, and so less likely to develop cervical cancer anyhow AFAIK).
55: I'm a bit frustrated with my son's psychiatrist. The doctor gave us some excellent advice on how to manage the kid's issues -- but also prescriptions for ADHD and (later) anxiety. I think the ADHD prescription is actively harmful (what with the appetite and sleep issues). The anxiety prescription is new enough that I think it's too soon to evaluate that -- but it addresses a genuine issue, which is not so clear to me with the ADHD medicine.
But I can't really argue this because there's no question that, overall, the doctor has done my kid a lot of good. He gave the boy's mother and me some really terrific advice -- so good that I'm inclined to attribute improvements to that, rather than the drugs. (I should add that, importantly, my son -- who is 17 -- believes he ought to be on the medications.)
52, 54: When I was in college, I, well. spazzed out, in the dining hall in front of everyone I knew. I was hospitalized and diagnosed as having experienced an idiopathic grand mal seizure. I was pleased to have a genuine diagnosis. But I later realized out that "idiopathic" just means it happened once, and "grand mal" is French for "Big Bad."
Well I trust you have built yourself a fitting dungeon in the interim.
Well, it turns out I'm slightly healthier than I thought, lost a little weight, BP was up but only slightly, bad cholesterol is low, unfortunately so is good cholesterol. But I've kept off the diabeatus for another year, so that's something. Dr. actually wrote little smiley faces on my test results printout, I don't remember ANY Dr. doing that before.
And the lurkers support me at the other place.
Well done, Natilo! We nonlurkers support you, too!
Glad to hear you're doing better, Nat.
I'm picturing the doctor directing the office staff to cut out the faces from the pain scale with the visual analogue so that one can be selected and taped to each patient's medical record.
And not finding a happy face, having to write one in by hand while cursing the complex insurance forms that keep the staff working too hard to cut out enough faces.