Medical Malarkey: rhetoric, trust, and duty in the Internet Age

A scene in the pilot episode of Hulu’s new show Casual that illustrates the manner in which too many people get their medical information nowadays and the caliber of that information:

Blonde: I’m paleo. It’s why I’m drinking water. I only consume foods that were available during the Paleolithic Era. […] It’s healthier.

Alex: A hamburger with bacon?

Blonde: Yeah. It’s the bun that’s bad for you.

Alex: Pretty sure that’s not true, but okay…

Blonde: Cavemen? They didn’t eat any processed grains or sugar and they lived much longer, healthier lives than us.

Alex: Again, I’m pretty sure that’s not true, but I’m happy to move forward without an argument.

Blonde: It’s scientific. Like, they’ve done studies. A guy told me about it at CrossFit.

Today’s rant is about the need for doctors to not only treat, but educate their patients. Medicine is hard and complex; it’s why doctors train for so long, and it’s why patients go to them. But many people with no training want to be involved in their own care nowadays and if doctors don’t take the opportunity to educate them so they can be, they’ll fill in the gaps with things they hear at CrossFit or read on the internet.

I’ve lamented before that I’ve never really had a conversation with my GYN. (Un)luckily for her, I am inclined to turn to PubMed for answers, so I am decently able to fill in the blanks left by our brief exchanges. That can’t be the expectation for every patient, though. (Especially since public education is not required to include basic goddamn statistics.)

The Information Age has changed patients’ habits and the growth of the healthcare industry has changed the constraints on doctors. Unfortunately, these seem to be driving an ever-widening wedge between doctors and patients and every kind of information and rhetoric from peer-reviewed scientific papers to magical thinking is flooding in to fill the gap. Said information and rhetoric might live on the internet, but it has a lot of real-world power; it is very important that the knowledge that circulates be as accurate as possible, especially when used by an outlet that has a lot of readers/followers/views.

To that end, I’ve been tweeting and commenting my ass off trying to get a September 1 Bustle article by Gina Florio (“Are Heavy Periods Dangerous? What Your Flow Can Tell You About Your Health”) corrected. The damn thing states that SEVENTY PERCENT (70%!!!) of women have endometriosis. Not that 7 to 10 have it, nor that it is the cause of chronic pelvic pain in 70% of cases of chronic pelvic pain. (Both of which are accurate estimates.) We’re talking a high enough number that any nonparous woman with rough periods is going to read that and freak out about her fertility if she wants the option of having kids one day (because, of course, the infertility risk wasn’t addressed in a nuanced manner). Here’s the equally frustrating thread below my comment:

Bustle

Who, in this scenario, would have benefitted from a better understanding of a health topic and/or epidemiology? Well, there’s the author and her editor(s) who respectively made and failed to catch the error. The first person to reply to my comment (#1) clearly has a very poor understanding of epidemiology, yet felt compelled to respond. (Note that the same number of people agree with her as with me, based on “likes.” *sigh*) Then there’s #3 who thinks the entire rest of the article with regard to endometriosis might be wrong because I corrected [what I hope to the gods was] a typo AND because her doctor is either incompetent or did a terrible job explaining her condition to her. She’s not dumb. She’s referencing Latin roots trying to reason through this. And even if her IQ were barely high enough for her to be self-sufficient, it would still be her doctor’s responsibility to make sure she understands what’s going on with her health so she can make informed decisions. And yet…

I hope that laypersons who write about health feel a moral duty to their readers and followers (especially in the absence of a legal one) not to propagate false information nor to gloss over the nuance of important matters such as topics of health. Actually, I want that from all media with regard to all topics, which is a major reason I started this blog. I realize the standards are different for medical professionals versus laypersons discussing health publicly, but there is the potential, in this era of anti-intellectualism and institutional mistrust, for readers to suffer or even die when they latch onto misinformation they encounter on the internet. I won’t provide examples here, but SciBabe and many other outlets do so.

There is also the potential for doctors to use irresponsible rhetoric when talking to patients that helps push them toward the internet woo. Doctors can’t just say, “You have PCOS. Now you’re at risk for Type II diabetes, heart disease, mustaches, obesity, and infertility.” It’s a LOT to take in.

Especially with regard to things as personal and stigmatized as reproductive health, you had damn well better be willing to discuss the nuance. If you bring up a gynecologic problem and the associated risk of infertility, know that if you skip the nuance, your patient is headed straight to the interwebz for solutions that you didn’t offer or sufficiently explain. If you don’t bring up infertility with regard to disorders such as PCOS and endometriosis, your patient’s trust will be violated when she finds out elsewhere; the odds that her sources will explain the risks to her fertility in a nuanced manner are slim to none.

At the very least, OB/GYNs need to be able to send women home with a list of trusted resources and the offer to answer any questions they have before their next visit via phone or email.

Fast forward to yesterday, I was Googling around to see what the experiences are of women with PCOS coming off of hormonal contraceptives because I’m a tad vain and I was thinking recently that it would suck to have adult acne and weird fat deposits again when I (eventually) go off the pill to have kids. I didn’t find much in the way of answers, but I did find this 2013 blog post by Claire Baker.

Before I discuss the blog post, I want to say that I admire Claire—and any woman—for being willing to share her experiences with menstruation and PCOS. I absolutely do not ever want to discourage the sharing of personal experiences by females (girls, women, trans folks). Female reproductive health, in particular, should be okay to discuss openly and it’s to our detriment when it’s not.

This is not an entirely apt example because of the temporal aspect, but when someone is having a heart attack, no bystander in his or her right mind would administer a mug of vinegar instead of an aspirin and possibly CPR. But “Female problems” don’t have the same visibility as heart disease, and when misinformation about gynecologic health circulates, it hurts women.

Though Claire’s post was clearly researched and the facts she stated about PCOS were largely accurate, there was some misleading rhetoric and some spots where nuance needed to be added back in. I didn’t choose her post to pick on her, but rather because it was one of the better blog posts about PCOS and yet the explanation she got of her condition was clearly lacking, and it doesn’t seem that she feels she can trust her doctor with her questions. My comments disagreeing with Claire’s post are not criticisms of her, but of her GP for not forging a functional relationship with her and much more so of the medicine-as-business-first model that has made patients doubt the intentions of good doctors. (Hell, why wouldn’t they under that paradigm?)

Disclosures: (1.) For those of you who don’t already know, I am not any kind of medical professional; just someone who likes reading medical studies. (2.) I only read this one post on Claire’s blog, so I have no idea where the story goes from here, but the point is that this rhetoric is out in the world, easily located (at least for me), and clearly resonating, based on the comments section. And, (3.) I didn’t read the Chinese Medicine section of and I won’t be commenting on it; this is not because I am arrogant enough to believe that only Western medicine works, but because I rely on scientific studies as opposed to tradition for my information. Studies are conducted on both Eastern and Western medicine and I am all for any evidence-based treatment, regardless of its origin.

Without further ado, Claire’s original writing is in black and my notes are in red:

So what does Western medicine say?

I’ve had numerous blood tests to suss my hormone levels and they’re all A-OK, besides a potentially under-active thyroid. There is a strong correlation between PCOS and Hashimoto’s autoimmune thyroiditis. Autoimmune thyroiditis occurs at about 3 times the rate in women with PCOS. Hopefully Claire’s doctor knows this and intends to monitor the situation. An ultrasound has revealed however that I have polycystic ovaries. This discovery (combined with the lack of menstruation and a history of problematic acne) led my Doctor to diagnose me with Polycystic Ovarian Syndrome (PCOS). Assuming she excluded other possible causes of the symptoms, Claire’s doctor was right to diagnose PCOS; acne is a sign of excess androgen activity, Claire has experienced lack of/infrequent/irregular ovulation, and literally has polycystic ovaries. These symptoms fulfill EVERY diagnostic criteria of the NIH, Rotterdam, and Androgen Excess PCOS Society guidelines to diagnosing PCOS.

Polycystic Ovarian Syndrome (PCOS)

PCOS is a syndrome associated with hormonal imbalances that can prevent ovulation and cause a variety of symptoms including period problems, infertility, excessive hair growth, acne and weight gain. Often Women with PCOS have an increased risk of developing insulin resistance and diabetes.

It’s important to be clear here however that PCOS is not a disease. Rather, it is a collection of symptoms (which means different women will have different symptoms and to varying degrees) and is one of the most common female endocrine disorders and the most common cause of infertility in women of childbearing age. (Her link.) As it is a relatively “new” syndrome, there is a mountain of new information coming out about PCOS all the time which is great – but can also be conflicting and confusing. Yes! Right on! Though, it is important to note that the fertility problems are very often reversible with weight loss and/or medications.

__________________________________________________

But do I really have PCOS? I’m not so sure.Almost certainly, YES.

While I don’t have the excessive hair growth (not required in the presence of other symptoms of excess androgen activity) and am not overweight (also not required), I have battled with hormonal acne (a manifestation of excess androgen activity) since the age of 13 and do gain weight easily. My Doctor has taken the position that I have always had PCOS (which is the only logical position to take because PCOS is genetic and not acquired) and the pill masked the symptoms by regulating my periods and clearing up my acne. The pill certainly helped to clear up my acne as well as lose weight, so perhaps this is the case, however I didn’t have irregular periods before commencing the pill.

The only option I was given by my GP upon her diagnosis was to recommence taking the pill. She explained to me that the risk of uterine cancer increased significantly when menstruation does not occur at least 4 times a year (although failed to mention the proven link between the contraceptive pill and breast cancer—Many of these studies are outdated as the dosage for hormonal contraceptives is far lower than when they were first introduced; a recent study found no increased risk of breast cancer among women aged 35 to 64 who were current or former users of oral contraceptives in a large population-based, case-control study involving over 9000 women.) and without a period now for 10 months, she felt I was better to go back on the pill until such time that I wanted to fall pregnant. She assured me that there was no connection between the contraceptive pill, PCOS and infertility.

Again, I’m not so sure. To reiterate, infertility associated with PCOS is rarely intractable. Further, the pill will not harm your fertility and, depending on the hormones used, may actually have protective effects. In PCOS, insulin resistance and increased androgenic activity both cause problems with ovulation. Some birth controls—especially those approved to treat hormonal acne—lower androgens without treating insulin resistance (and may even exacerbate it for the length of time you use them), but the underlying insulin resistance can be treated by inositol (a supplement) or Metformin. You should talk to your doctor about the best regimen for you.

The pill PATCH (and to some extent, the ring, but the PILL’s effects were slight) has been proven demonstrated to significantly deplete levels of essential vitamins and antioxidants. Yes, a SMALL (n=70) study found that different methods of hormonal birth control deplete coenzyme Q10α-tocopherol, and “total antioxidant capacity” to varying degrees. They were also very clear that “the clinical relevance of differences in antioxidant profile […] is not known,” and they recommended that future studies evaluate the benefit of supplementing these antioxidants in women using hormonal contraceptives. It could very well be the case that supplementation brings the levels back up to normal and resolves any *potential* problem because, again, no actual problems were demonstrated in the study’s participants. I could go into more detail about why this study is not cause for alarm, but I won’t unless someone asks me to do so in the comments. It inhibits ovulation and true menstruation (no, that is not your real period on the pill, it is a withdrawal bleed—True fact.) so effectively I did not ovulate for 10 years. Is it possible that this could contribute to polycystic ovaries? There is absolutely no clinical evidence of this in spite of decades of studies of hormonal contraceptives, so NO. Also, there is ZERO evidence that an individual can do anything to acquire PCOS, the cause of which is widely accepted as genetic. And what was I saying earlier about the essential nourishment required to prevent blood deficiency? Things that have no basis in science and for which there is less than no evidence. (I did go back and read the pertinent paragraph, since it was referenced here.) After a decade of pill-induced malnourishment (a contributing factor to PCOS Wait, what? No. Again, PCOS is entirely genetic, not acquired. You can do things that make it better or worse, but you cannot do anything to acquire it if your genes don’t contain the errors that give rise to it.), I kind of don’t really feel like going back on the pill. Strangely enough. Okay, but you should, if your period is that infrequent. Your doctor is right that you’re increasing your risk of gynecologic cancers. And should you, gods forbid, be diagnosed with one, pleeeaaase do not blame it on hormonal contraceptives unless you can live with the idea that disseminating that bunk might cause the unnecessary suffering, or even death, of other women.

To recap, the solutions, as I see them, are as follows:

  • Healthcare administration needs to join the 21st century and to allow doctors to meet the changing needs of patients. Allotting more staff time per patient, even in busy specialties, would make it easier for medical professionals to build trust and regain authority in the realms of health and wellness. Since what I’m suggesting is not the basis for a good profit model, I don’t actually expect healthcare systems to suddenly put patients first if they don’t already.
  • In the meantime, I urge doctors and medical staff to do all they can to be responsive and to educate patients who want to take an active role in managing their health. When I say “educate,” I don’t mean “use your influence to hawk unproven products” (*cough cough* Dr. Oz and a bunch of other quacks *cough cough*), or “resort to nuance-free rhetoric” (especially not anything chemophobic). Too many medical professionals are currently helping to undermine of the institution of medicine. You owe it to your station and to your patients to keep abreast of sound medical research and to deploy evidence-based treatments accordingly.
  • Patients, if you don’t trust your doctors more than the motherfucking internet, find new ones! If you trust them but still can’t get the answers you need from them, express your concerns and, if that doesn’t work, find new ones. I know how scary and frustrating that process is–believe me–but it’s your health and your money and you shouldn’t waste either on something that’s not working for you.
  • I also urge every writer on the internet–professionals and hobbyists alike–to take their influence seriously and to only disseminate nuanced, factual information. Anyone who is inclined to flout this responsibility needs to be honest with themselves about the very real possibility that they will be responsible for pain, suffering, and perhaps even loss of life.
  • Everybody else, if the conversation needs changing, change it! If someone in your friend circle is raving about a naturopath who prescribed her 6 year-old ballpark 37.5 times the amount of ‘all natural’ Vitamin A he should be consuming in order to treat eczema (and not, ya know, severe Vitamin A deficiency), say something! Tell her that’s batshit crazy, bombard her with articles on dead Eskimos, report her to child services… hell, I don’t know. But whatever you do, don’t let pseudoscience and bad rhetoric slide because they are not harmless.

Leave your questions & etc. in the comments!

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