women's health

Mammography Screening – When an Educated Consumer Is Not the Best Customer

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The purpose of preventive mammography screening is to diagnose breast cancers that would result in death at an early stage, thereby decreasing the incidence of late stage breast cancer and overall breast cancer mortality.

A number of reviews and studies have been published over the past several years to determine the effects of mammography screening in achieving these goals. They reveal that mammography screening provides little to no benefit in terms of reducing breast cancer mortality, and yields significant risks and harm to women who receive false positive results and especially to those who are overdiagnosed and overtreated. The risk of overdiagnosis of cancers that would never have been a threat to or even discovered by women in their lifetime includes future treatment-induced cancers.

Statistical percentages such as a 20% or 30% reduction in mortality, ordinarily referenced in reports promoting mammograms, mislead women into thinking that a large number of lives are being saved. However, by looking at the actual number of lives saved by preventive screening in light of the total population screened and the actual number of women harmed by false positives and overdiagnosis we have a truer picture of the effects of mammography screening on breast cancer mortality. Real numbers show that the actual risk to women of dying from breast cancer is far less than women are led to believe while the risk of overdiagnosis, rarely mentioned, is far greater than they would expect. Studies showing a mortality reduction with mammography screening often manipulate statistics to misrepresent the perceived benefits.

The perception that mammography is of great benefit is also influenced in part by the promotion of screening as a life saver and by overdiagnosed women believing their lives were saved.

Despite evidence to the contrary, medical and charity organizations support continued mammography screening of women. Women are not made aware of the real evidence against screening. This is in part because of vested interests and in part because of consumer demand for preventive testing based on the even miniscule possibility that it may save their life. However, if women were aware that the possible harm is far more significant than any possible benefit, they would probably opt out of preventive mammography screening.

The breast cancer industry benefits from women’s lack of knowledge. It is not in their best interest to tell women the truth.

Marketing Mammography by Disregarding Data

Preventive mammography screening is supposed to save lives by detecting and treating cancers at an early stage, before they become clinically evident. This is supposed to reduce the numbers of late stage breast cancers and the overall mortality from breast cancer.

This is what every woman who goes for preventive mammography screening believes and what organizations like the American Cancer Society promote and charities such as the Susan G. Komen Foundation will have you believe with those ubiquitous pink ribbons and their “Run for the Cure”.

While you continue to wait for them to finally discover a cure, be aware of the following: despite the assertion that “mammograms save lives” the truth is that millions of women are being misled into undergoing a screening that has been shown over the years to do more harm than good in multiple ways.

If the end result was a really significant reduction in breast cancer mortality we might concede that some of those harms are worth the risk. Unfortunately, too many studies have shown that although more early stage cancers are being detected there is no reduction in the overall mortality from breast cancer and that screening significantly harms more women than it helps. The dangers of screening include many false positives with additional diagnostic testing and, more critically, a high rate of overdiagnosis — the detection of cancers that would never have been a threat to or even discovered by women in their lifetime. Overdiagnosed cancers lead to overtreatment with surgery, radiation, chemotherapy, and hormone therapy that needlessly put women at risk of future treatment-induced cancers. Preventive breast cancer mammography screening has really been a colossal failure and the wool continues to be pulled over women’s eyes.

What the Research Really Shows

Consider the following reviews and studies (published between 2011- 2015):

  • In a retrospective trend analysis on mammography screening, researchers Philippe Autier, Mathieu Boniol, Anna Gavin, and Lars J. Vatten compared 3 pairs of neighboring European countries having  similar population structure, socioeconomic circumstances, quality of healthcare services, and access to treatment where mammography screening was implemented many years apart in order to determine the effect on mortality that such screening had on early detection of breast cancer. “Our study”, they concluded, “adds further population data to the evidence of studies that have used various designs and found that mammography screening by itself has little detectable impact on mortality due to breast cancer.”
  • Drs. Archie Bleyer and H. Gilbert Welch discussed their 30 year review of United States data related to mammography screening of women 40 years of age or older. They found that while screening mammography has been associated with a doubling in the number of early stage cancers detected, it has only resulted in a decrease of 8 cases of late stage cancer per 100,000 women. This disparity is attributed to an estimated overdiagnosis (and overtreatment) in the past 30 years of 1,300,000 women or an overtreatment rate of 31% of all diagnosed breast cancers.
  • The Swiss Medical Board, an independent health technology assessment initiative, performed a comprehensive review of mammography screening, noting the controversy over the previous 10-15 years regarding mammography’s benefits. Reviewing mammography screening from the first trials 50 years ago in New York City to the most recent led to the determination that it’s possible that of 1,000 women screened, one death attributable to breast cancer might be prevented although there was no evidence showing that overall mortality was affected. However, the prevalence of false positive tests and overdiagnosis, they concluded, causes women more harm than good. For every breast cancer prevented over a course of ten years of screening, beginning at age 50, between 490 and 670 women will have a false positive diagnosis and repeat examination; between 70 and 100 women will have an unnecessary biopsy; and between 3 and 14 women will be overdiagnosed.
  • The Nordic Cochrane Report, an independent reviewer of scientific studies, reviewed 7 eligible studies comparing women ages 39 – 74 who were and were not screened using mammography. The authors, Peter C. Gøtzsche and Karsten Juhl Jørgensen, determined that breast cancer screening reduces mortality by approximately 15% and that overdiagnosis and overtreatment is at 30%. Realistically, this means that for every 2000 women invited for screening over the course of 10 years, one woman will have avoided dying of breast cancer while 10 healthy women will have been overdiagnosed and overtreated. In addition, over 200 women will have a false positive diagnosis requiring additional screening.
  • The 25 year follow-up for the Canadian National Breast Screening Study, by Anthony B Miller, et al., which compared screened and unscreened women ages 40 – 59 for breast cancer mortality, found no reduction in mortality as a result of the screening. They determined that there was an overdiagnosis of breast cancer of 22% among women with screen detected invasive cancers. Screening 44,925 women resulted in an overdiagnosis of 106 women or, in other words, for every 424 women screened, one woman was overdiagnosed.

Statistical Shenanigans in Mammography Numbers

The article that I like most however (a touch of sarcasm here) is this one that headlines:
National screening programme has markedly reduced breast cancer mortality

Read only the headline or just the first two paragraphs and you will have confirmed that mammography screening reduces breast cancer mortality between 20 – 30% in the women who undergo testing.

Continue to the third paragraph and you will find that the study actually corroborates all the other ones listed above – that very few lives are saved by preventive mammography screening and that a far greater number of women are overdiagnosed and overtreated. It reads:

“The evaluation examined a number of sides to the national screening programme and determined among other things that the probability of being overdiagnosed by screening is five times higher than the probability of avoiding death by breast cancer. Overdiagnosis in this context means that without being screened, the women would never have noticed, been aware of or died from the disease. Under the Norwegian Breast Cancer Screening Programme, all women aged 50 to 69 are invited for mammography screening every two years. Under the programme, for every 10,000 women invited to 10 rounds of screening, roughly 377 cases of tumours or pre-malignant breast lesions will be detected. From this group, roughly 27 women will avoid death from breast cancer as a result of early diagnosis and treatment. However, roughly 142 of them will be overdiagnosed with a disease that will turn out to be harmless.”

It should also be noted that the prevalence and harms of false positive results, although not discussed in the article, are considered in the evaluation report. They are also not insignificant.

Although the other reports cited above show even more harm and fewer lives saved, we can clearly see from the intentionally misleading Norwegian report, just how inconsequential mammography screening is in reducing breast cancer mortality.

Declaring a reduced mortality rate of 20-30% due to screening without providing actual numbers is highly deceptive. The key isn’t the percentage but the actual numbers upon which those percentages are based. If we found that 5,000 of these 10,000 screened women were diagnosed with a breast cancer that would have metastasized and 25% are saved from death by early screening, then 1250 women would have been helped. However, given the actual figure of 27 women saved, a 20 – 30% reduction of mortality takes on a very different meaning.

In reality, the headlined “marked mortality reduction” figures were actually calculated based on the assumption that without screening either 135 women (20% reduction) or 90 women (30% reduction) will have been assumed to die of breast cancer. In other words, among 10,000 women not screened, from 9/10 of one percent to 1.35% of the women would likely die from breast cancer. This also means that between 63 -108 women will die of breast cancer regardless of having been screened. (It has been found that breast cancers which metastasize are quite aggressive and often become palpable within a year after screenings that yielded negative results. False negative results can also be to blame.)

The 377 women diagnosed with tumors or pre-malignant breast lesions out of the 10,000 women screened represent almost 3.8% of the screened population. The 27 treated women who avoided death by screening represent not quite 3/10 of one percent (.0027) of the 10,000 screened women. The 142 women needlessly diagnosed and treated represent 1.4% of the 10,000 women screened.

Overdiagnosis Feeds Misperception and Profits

When looking at the actual number of women involved, the 20-30% mortality reduction doesn’t sound so wonderful anymore – but then neither does the risk of breast cancer seem as scary.

Nevertheless, this estimate of breast cancer mortality with or without screening is far less than most women believe population and personal risk to be. According to the Swiss Study cited above women believe that for every thousand women screened 80 will die from breast cancer while for every thousand women not screened 160 will die from breast cancer. The real effect of screening, they found, is that for every thousand women screened 4 will die from breast cancer and for every thousand women not screened 5 will die from breast cancer.

Why the great disparity between women’s real and perceived risk of dying from breast cancer?

As expressed in the Norwegian study’s evaluation report, just the fact of the screening programs alone increase women’s perception of the risk of and mortality from breast cancer.

More importantly, however:

 “Overdiagnosis creates a powerful cycle of positive feedback for more overdiagnosis because an ever increasing proportion of the population knows someone—a friend, a family member, an acquaintance, or a celebrity—who “owes their life” to early cancer detection. Some have labeled this the popularity paradox of screening: The more overdiagnosis screening causes, the more people who feel they owe it their life and the more popular screening becomes. The problem is compounded by messages (in the media and elsewhere) about the dramatic improvements in survival statistics, which may not reflect reduced mortality, but instead be an artifact of overdiagnosis—diagnosing a lot of … women with cancer who were not destined to die from the disease.[1]

This all raises the question: Why the continued emphasis on screening when we have so many studies that all show little benefit to mammograms and in reality significant harms?

Science writer John Horgan in his article Consumers Must Stop Insisting on Mammograms and Other Ineffective Cancer Tests blames the continued use of mammography screening on financial benefits and on consumer demand for testing. About the profit motive he points to an editorial about mammography screening in the British Medical Journal:

“The BMJ editorial urges health-care providers to reconsider priorities and recommendations for mammography screening and other medical interventions.”

“The editorial adds, ‘This is not an easy task, because governments, research funders, scientists, and medical practitioners may have vested interests in continuing activities that are well established’.”

About the consumer demand for testing he says:

“… ultimately, the responsibility for ending the testing epidemic comes down to consumers, who too often submit to — and even demand — tests that have negligible value. Our fear of cancer, in particular, seems to make us irrational. When faced with evidence that PSA tests [yes, prostate cancer as well as thyroid and lung cancer are also overdiagnosed – CL] and mammograms save very few lives, especially considering their risks and costs, many people say, in effect, ‘I don’t care. I don’t want to be that one person in a million who dies of cancer because I didn’t get tested.’ Until this attitude changes, the medical-testing epidemic won’t end.”

Perhaps if they knew that testing may cause them to be one of those several thousand who increase their risk of dying from testing, they would reconsider.

I still remember the commercials made by Sy Syms of discount designer clothing store fame. He would always say: “An educated consumer is our best customer.” For the medical industry, it seems, their best customers are the ones they keep in the dark.

Additional Resources and Reading

Cancer Active
Breast Cancer Action
Screening For Breast Cancer with Mammography
Exposed
The Mammogram Myth: The Independent Investigation Of Mammography The Medical Profession Doesn’t Want You To Know About
Overkill: An avalanche of unnecessary medical care is harming patients physically and financially. What can we do about it?

This article was published originally on Hormones Matter in June 2015. 

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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[1] http://jnci.oxfordjournals.org/content/102/9/605.full

This article was published originally on June 20, 2017. 

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Tangled Ribbons, Tangled Lives

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Awareness ribbons looped on lapels. Around trees. Through chain-link fences. Yellow for missing children and bone cancer. Red for heart disease and HIV/AIDS. Blue for chronic fatigue syndrome and arthritis. Even ribbons spotted like Holstein cows raise awareness of birth defects.

The best known ribbons of all; pink for breast cancer.

Tangles of ribbons reminding us of human miseries we’d rather forget. Or have never heard of. But there are no satin ribbons for poor women who die young.

Even as their numbers climb.

Tie a Yellow Ribbon

Yellow ribbons first encircled trees in 1979, signifying hope for American hostages held in Iran. Red ribbons followed in 1992, to proclaim support for people with HIV/AIDS and encourage effort at finding a cure for the disease.

Pink ribbons fluttered on the scene in 1991. The earliest Komen Race for the Cure was held in Dallas, Texas in 1983. Participants in 1991’s Race in New York City were the first to receive the now-familiar pink ribbons.

Marshall McLuhan said “The medium is the message” more than 50 years ago, explaining:

The medium is the message because it is the medium that shapes and controls the scale and form of human association and action.

McLuhan didn’t have awareness ribbons in mind. He died in 1980. Though bright snippets and swathes of ribbon are a medium by McLuhan’s description. The ribbons convey messages that trigger emotional responses and actions.

But what messages are those ribbons sending? Especially the pink ones?

Dying Young

Most Americans expect to die old. We figure our lives will be longer than our grandparents. That our children will enjoy a few years more than we’ll have. Those are reasonable expectations. For most of us.

Not for poor white women. Their lives are shortening, not lengthening, according to a study published in Health Affairs in 2013. Researchers David Kindig and Erika Cheng compared female mortality across US counties. (The paper is available free here.)

They found life expectancy for some women has been dropping for decades. White women between ages 15 and 54 died younger than before in close to half of counties nationwide during the period from 1992 to 2006. The life expectancy for white men declined in just three percent of counties during the same time.

Other research (here, here and here) using different time periods and statistical methods, reach brighter–or gloomier–conclusions. All agree on the underlying fact that poor white women with little education are dying younger than better educated, better off women of similar ages.

Few states escaped increased female deaths. Only the counties in New England, along with Arizona, maintained or increased life expectancy for all women. Some states did much worse. Women across Appalachia, Oklahoma, the Deep South and northern Montana lost the most time.

The culprits that conspire to shorten lives aren’t surprising:

  • Smoking
  • Obesity
  • Narcotic overdoses
  • Suicide

Smoking, drug use and overeating are symptoms of deeper ills. Poverty, with its allies, hopelessness, no jobs, scanty education, are the true thieves of women’s lives.

The Urban Institute published a study in March, “Death Rates for US Women Ages 15 to 54: Some Unexpected Trends”. The authors Nan Marie Astone, Steven Martin and Laudan Aron, updated the findings from the earlier works. They also suggested a broader, more disturbing interpretation of the rise in women’s mortality:

The recent spike in white women’s mortality may be analogous to the spike in black mortality that accompanied the rise of the crack epidemic in the late 1980s and early 1990s. If so, one might predict that this mortality epidemic will ebb in the same way that several causes of death associated with the crack epidemic subsequently ebbed. The appropriate public health responses to such spikes are targeted interventions for the affected groups. A more troubling possibility is that white women are experiencing a systematic reversal in the long-term trend of mortality decline. Under this more pessimistic scenario, the high, stagnant, or rising death rates we observe among adult women now may persist as these women age, causing a substantial lowering of overall life expectancy in the United States. And because death rates are an indicator of population health, such a reversal in the trend of mortality decline would necessarily reflect widespread deficits in population health.

Ignoring the Evidence: Mammogram Wars

The relentless breast cancer screening debate stormed while poor women were dying in America’s heartland. Few subjects in health care are as acrimonious, riddled by politics and immune to science as the value of mammography.

Women, scientists, doctors and policymakers feud about whether breast cancer screening with mammograms saves lives. The fight has persisted for a generation without clear answers. If mammograms unquestionably saved lives, we’d know by now. We don’t.

Worse, mammography comes with risks. Over-diagnosis with its unnecessary treatment. Frequent false positives accompanied by anxiety, emotional distress and uncertainty that gnaw at women for years.

Truisms are reassuring because, well, they’re true. None truer than “A picture is worth 1000 words.” Two vivid infographics show the miniscule benefit of mammograms. The first is available on the NPR website. Published December 17, 2014, “What Happens After You Get That Mammogram”, estimates benefits and harms for 10,000 women who have yearly mammograms for ten years. It figures that:

  • 3568 women will have normal mammograms each year for ten years
  • 6130 women will have at least one false positive and 940 will have a biopsy they didn’t need.
  • 302 women diagnosed with breast cancer

Of the 10,000 women who have annual mammograms, 302 will be diagnosed with cancer. It sound like a positive outcome, right? Maybe not. Here’s the catch. Of those 302:

  • 173 would have survived with or without screening.
  • 57 will be over-diagnosed with a cancer that would never have become a problem.
  • 62 women will die despite being screened because of aggressive tumors.
  • Ten lives will be saved.

A 100,000 mammograms must be done to save ten lives!

The other infographic illustrates an article from the New England Journal of Medicine. The piece was written by two Swiss doctors, members of the Swiss Medical Board, recommending against routine mammography screening for women 50-69 years old.

“Abolishing Mammography Screening Programs? A View from the Swiss Medical Board” is free at NEJM. The graph with the review compares American women’s perceptions of mammography benefit to the actual effects. It supposes 1000 women screened every two years for ten years:

  • Women assume with screening 881 women will live, 80 will die from breast cancer and 39 will die from other causes.
  • In reality, 956-957 screened women will live, 4 will die from breast cancer, 39 or 40 will die from other causes.

But, the surprising numbers are:

  • Women expected 801 women to be alive without screening, 160 to die from breast cancer and 39 to die from other causes.
  • When, in fact, 956 women will live without screening, 5 will die from breast cancer and 39 will lose their lives to other causes.

These numbers are central to the never-ending mammogram wars because women believe two crucially erroneous things about mammograms:

  1. Many more women will die without mammography, 16%, when in reality, it is one half a percent (0.5%)
  2. There’s a large difference in death rates between screened and unscreened women. The difference is just one woman.

No Free Lunch

The dismal performance of mammography screening matters regardless of cost. A screening test with little benefit and recognized harms isn’t a bargain even if it’s free. But mammograms aren’t free. (The Affordable Care Act requires that preventive mammograms be “free”. They aren’t. You pay for them with increased premiums and higher deductibles on other care.)

The annual cost of mammography screening was calculated at $7.8 billion in 2010 by a group of researchers writing in the Annals of Internal Medicine (gated) last year. The group then estimated the total costs for several proposed mammography guidelines for women 40 to 85 years old. Screening every year starting at 40, every other year from age 40 or every other year from 50 to 74. They assumed 85% of women would be screened (probably a high estimate). The price ranged from $10.1 billion for the most frequent screens to $2.6 billion for the least aggressive guidelines.

That is base cost. It does not include the extra fare when false positives and over-diagnoses are added. Mammography over-diagnosis runs another $4 billion per year, according to a recent calculation in Health Affairs. The price is likely much higher because the authors of the study only included women 40 to 59 years old. Older women needed fewer biopsies to find one case of cancer, but women ages 60 to 74 still had false alarms.

Americans are spending roughly $11 billion to $12 billion each year for a test of uncertain value and unneeded follow-up.

So what? Remember the dying women?

Zero Sum Game

The federal government is frozen in place, unwilling or unable to give ground on spending money to save lives. Most state governments are tied in knots, especially the states with climbing female death rates.

Politically powerful women and men fight to head off any cuts to mammography programs. An anguished howl was heard after the US Preventive Services Task Force (USPSTF) updated its 2009 Draft Recommendations last month. The panel found harms of mammograms for women 40 to 49 may outweigh benefits and downgraded their recommendation to “C”, threatening the “free” mammograms.

Senator Barbara Mikulski (D) of Maryland made her displeasure known at once to Secretary Burwell at the Department of Health and Human Services. The senator warned the secretary that:

[S]hould the draft recommendation be finalized, I will actively and aggressively pursue all legislative options available to ensure that women aged 40 and older are able to continue receiving free annual mammograms.

Money spent to care for people is now a zero sum game. One group’s win is another group’s loss. Money devoted to “free mammograms” may be money lost for care to Appalachian women.

After 30 years of worldwide research, billions of dollars and reams of federal legislation, we still don’t know whether mammography saves lives in the end. We don’t know whether $12 billion spent on women in Appalachia, Oklahoma and the Deep South will save lives, either. It’s time to find out.

The Color Of Shadows

What color awareness ribbon for women who die young? No ribbon, but the shadow of ribbons. The shadow cast by every pink ribbon should be their awareness symbol. Komen supporters Race for the Cure in the sunlight. Poor women race for their lives in the shadows.

When breast cancer activists run in races, the shadows running alongside are those of women dying too young.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter.

Image created using Canva AI.

This article was first published on May 26, 2015. 

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Deconstructing Modern Illness: Idiopathic or Iatrogenic?

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A few weeks ago, I had the great pleasure of delivering a keynote address at the Midwifery Today Conference in Eugene, Oregon. As requested, here are my notes and the presentation deck. Enjoy.

Presentation Notes

Before we begin, I’d like to preface this talk with one of my favorite quotes by Maya Angelou:

“You did then what you knew how to do, and when you knew better, you did better.”

The talk I am giving is depressing. The magnitude of the health crisis we face is enormous. Indeed, from every angle we face threats of new diseases and disorders with a degree of complexity current medical practices are not equipped to deal with.

If I were a less hopeful person, I might bury my head in the sand. But I think, rather than sugar coat the difficulties we face, the only way we can find solutions for these problems to know more and do better. And so, in many ways, the quote above provides hope.

At the end of this talk, over the course of the day and course of your career, as you know more, you will do better. And that’s all anyone can ask of you – to keep learning and applying that learning and knowledge to the problems in front of you.

Today, I am speaking about how we deconstruct modern illness in a toxic world – and yes, the world is pretty toxic. What I’d like you to get out of this talk are three concepts.

Pregnancy is a time where we can break the cycles of bad health in a way not possible at other times of life. It has been my experience, that women trying to conceive and those who are pregnant and their partners are hungry for information about health. They want to learn about ways to improve their health so that they can have healthy babies. This means, as healthcare providers, we have an opportunity to affect change and improve the health of not only the adults but the children.  And so, we must take this opportunity counsel our clients to better health.

This brings me to the second lesson I hope to impart

Reproduction. I think reproduction should be viewed from a much broader and longer perspective. Some of the aspects of reproduction that we often don’t consider but should, include:

Dad’s health. So often when we talk about conception and pregnancy, all responsibility for the health of the pregnancy and child rests on the mom. This is absolutely shortsighted and as we see with the epigenetic, endocrine disrupting, mitochondrial impairing chemicals we face, dad’s health is equally important to the health of the offspring. Forgetting to include Dad in these conversations means opportunities lost.

Longer time frame both before and after pregnancy. I think we ought to consider reproduction across a much longer time frame. Ideally, both partners would begin cleaning up in the months and year before conception. Barring that, however, if we can begin working with couples earlier, maternal and fetal complications might just be reduced.

Similarly, the health of our children and their children depends upon our health. So any changes we make now, for good or for ill, impacts our children’s health and likely their children’s health. Therefore when we look at reproductive health, we must begin earlier and consider the long game – the transgenerational consequences of our actions.

Everything is connected to everything else. In Western medicine and science, we like to separate things, test theories, compounds, and toxicities individually; discuss diseases by morphological or physiological elements, neatly and concisely distinct from other diseases. And while that works in acute and emergent care, with trauma or injury, with basically everything else, this separateness doesn’t work at all. Think about it for a moment, from a logical or probability standpoint, which is more realistic, that we are a people with multiple, completely distinct disease entities, or the myriad of symptoms so many experience, have coordinate, common, connected, underlying causes that simply express in different organ systems. I think it’s the latter.

With modern illness (or maybe all illness), the kind of conditions that are chronic and where more often than not, multiple organs or systems are involved, simply tackling the health of one organ or remediating one symptom or set of symptoms in isolation, while dismissing the others, misses not only research and discovery opportunities but therapeutic opportunities as well.

So when I talk about deconstructing modern illness, a key portion involves understanding the connections between seemingly disparate disease processes.

Let the Deconstruction Begin

As I considered how to put this presentation together, I struggled with where to begin, what to leave in, what to leave out.

There is so much that needs to be understood about modern illness that we could fill a week of lectures and discussions. And we may, because I have way too many slides.

What I kept coming back to, however, is the notion that if I can teach you how to think health and disease, and medical treatments in general, if I can teach you how to question and evaluate the research, how to find the answers that you need; if I can give you a foundation and a framework for understanding the science, the economics and the politics of modern illness, then each of you can find your own answers, and perhaps, if you are so inclined, contribute back to the knowledge base, so that we all have a better understanding of these issues.

And so it is from that perspective that I have decided to approach this discussion. I want to give you a foundation and a framework from which to build your own house of knowledge. Sounds a little corny, doesn’t it, but bear with me, learning how to think critically about medical science might just save your life or the life of a loved one.

A Framework of Knowledge

I have a background and a natural inclination towards philosophy.

One of the questions that plagues my thinking is ‘how we know what we think we know’. I find that more often not, pondering from where and from whom the knowledge, the science, the politics, even the historical interpretations come from, tells us a lot about what it is we know exactly and what we really have no business claiming knowledge of.

With maternal health and in fact, the entirety of women’s health, when we deconstruct what is known and detach it from how we know it, or at least how we think we know it, it becomes very clear, very quickly, that our knowledge is severely limited.

In the title, I mention deconstruction. It means what it sounds like, a taking apart of things in order to understand the larger picture. The concept is a philosophical one, originating from a French philosopher Jacques Derrida. It was used primarily in literature to separate the text from the cultural associations in order to find a supposedly truer meaning. Ironically, his writing was all but completely indecipherable – so deconstruction of Derrida’s work was prohibitive, at least for me.

Nevertheless, the notion that we should look at a text, in this case medical diagnostics, what we consider illness versus health and the markers that reflect health versus illness, apart from their cultural context and what we assume their meaning to be, to see if they still prove valid, is a useful one. Often when deconstructed, the meaning, the validity of a particular definition of disease, is bundled with so many assumptions that its validity crumbles under its own weight. We’ll see this in many areas of women’s health.

Idiopathic or Iatrogenic?

The second part of the title reflects both the notion of deconstruction and the cultural context that influences the naming of things, but also hints a structural problem in medicine that comes from those assumptions. And if I am honest, it reflects my understanding, my biases towards modern medical care.

Idiopathic and iatrogenic are two terms routinely used in modern medicine.

Idiopathic, in particular is catchall for all of the disease for which we have no earthly notion about causation. A good percentage of the conditions affecting women are considered idiopathic.

When I was in graduate school, I read a report that suggested some absurdly high percentage of pregnancy complications were considered idiopathic – something like 60%. I have long since lost the report and have no idea if I am recalling the number correctly, but it was sufficiently high that I dug a little deeper.

How could it be that in the 21st century we did not know what was going on with pregnancy? After all, women have been having babies since the beginning of time. It turns out, no one was looking, and if they were, that knowledge did not make into mainstream medicine.

At the time, pregnancy and maternal health funding was less than 2% of the total NIH budget, of which most was allocated towards pregnancy prevention. I would venture that there is wealth of knowledge in this room that if it were to make into mainstream ‘medicine’ might redefine many conditions considered idiopathic, but I digress. Virtually no money went to basic research, understanding pregnancy complications like pre-eclampsia for example, and so, complications that many women suffer from were, and yet are, considered idiopathic.

While the connection between idiopathic and much of women’s health is easy to attribute to a lack of money, the notion of idiopathy is much more complicated than simply funding priorities. After all, cancer is considered idiopathic – and as we all know cancer is an industry, receiving billions of governmental and private research dollars.

Implications of Idiopathy

Claiming something is idiopathic absolves us of personal responsibility and accountability – it means that it does it not matter what we put into our bodies or into the into the environment – a boon for industry and for all of us who want to have our cake and eat it too, but from a medical standpoint, it absolves of an our own willful ignorance.

It means we don’t have to ask any more questions, study anything else. It implies that what we do not know is not our fault – it is random.

It allows us to say cancer is random and that our behavior matters not.

It allows us to ignore research like this, that attributes 80% of cardiovascular disease to lifestyle – to what we put into our bodies.

Or research that says glyphosate is actually dangerous.

Or research that says perhaps we shouldn’t put chemicals of unknown effects into pregnant women.

It allows us to live a bubble, and presume no matter what we put into our bodies, whatever we expose ourselves to will somehow magically dissipate and not affect our health.

It allows us to effectively write-off the differences between women and men in things like drug metabolism. And for our purposes, it allows us to narrowly limit what is considered iatrogenic – to only a few readily acknowledged illnesses. It’s a position that is more akin to magical thinking than what we consider medical science should be.

How does this affect medicine and women’s health in particular?

 

 

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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Image credit: Devon Buchanan from Cambridge, CC BY 2.0 <https://creativecommons.org/licenses/by/2.0>, via Wikimedia Commons

This article was first published on April 17, 2017. 

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Why Don’t We Listen to Women When They Are Sick?

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Last week, I posted yet another story on our Facebook group about how women’s health is ignored and psychologized by the medical profession. It is neither a new topic nor something particularly earth shattering. We post hundreds, if not thousands, of these stories both on our Facebook page and on Hormones Matter itself. Indeed, the entire premise of Hormones Matter is that these narratives matter, that there is truth and wisdom in the patient’s account of her or his health, something that has been lost in modern medicine over the last several decades.

The premise of last week’s article was that we rarely, if ever, believe women when they present health issues, sometimes with deadly consequences.

For decades, studies have shown that women with chronic pain conditions are more likely than men to be wrongly diagnosed with mental health conditions and prescribed psychotropic drugs. When men and women offer similar complaints of pain, women are more likely to be prescribed sedatives instead of pain relieving drugs. Further, a newly released study on women’s mortality rates after heart attack offers this insight, ‘Most physicians are male, and male physicians appear to have trouble treating female patients’.

The author of the article argues that the problem rests on the maleness of the medical profession. She is correct, but there is so much more to the story. While it is true that from the beginning of medicine women were excluded from not only the practice of medicine, but also, in building the current medical knowledge base. It is also true that entire body of knowledge cultivated by female caregivers, midwives and the like was usurped and essentially dismantled as our current model of medicine took over, medicine itself was never designed to ‘listen’ to or believe patients, male or female. From an article I wrote on the topic several years ago:

Historically, listening to patients has had a tenuous position in medicine. Some would argue that it was supplanted long ago by the physician’s all-knowing clinical gaze. The clinical gaze, a term used by French philosopher, Michel Foucault, is the ability to see correctly what is unseen, to bring to light and then describe the hidden truth of disease. It was what allowed the physician to penetrate the illusions of the non-scientific engendered by previous generations (16th – 18th century medicine) and to see the truth of the disease by correctly perceiving the signs and symptoms. The physician’s power of observation, his clinical gaze, aided by technology, gave him a vantage point inaccessible by mere mortals, and thus, incontrovertible.

The clinical gaze anchored modern medicine in a way that no other concept could. It brought with it the power to see truth, but also, to define it. No matter how potentially relevant to disease diagnosis, the patient’s truth or story could never replace the physician’s truth – the truth that was accessible only by him and through the all-knowing clinical gaze.

And so it was for most of the last century and a half, the physician was the arbiter of what was valid, of what could be seen and of what could be known about health and disease. The patient was no more than a body; living or dead, it did not matter. It was the job of the physician to perceive correctly what the body (not necessarily the patient) was showing him and then classify, communicate, and finally, treat appropriately.

What folks who attribute the problems in women’s health solely to the maleness of the specialty fail to recognize is that the foundation upon which modern medicine was built rests entirely on the physician’s ability to ‘see’ the signs of illness in a body and validate those observations correctly via the appropriate measures. If the physician does not perceive the signs of the illness at all, or correctly, or in a manner that can be measured, then necessarily, the symptoms with which the patient presents are not to be believed.

Certainly, there is gender bias. That is obvious. A system of knowledge designed by men, about men and for men, with women and their bodies viewed as aberrations to the normative male body, comes with a deeply ingrained bias. More than that though, the notion of perception as the defining characteristic of medical reality limits significantly what one can and cannot know about any given topic. Consider the age old philosophical riddle posited by George Berkeley and debated by philosophy students for generations:

If a tree falls in a forest and no one is around to hear it, does it make a sound?

At the root of this question is whether awareness predicates existence. According to Berkeley, material reality, for all intents and purposes, does not exist unless it is observed. Thus, awareness predicates existence. In that same regard, medical reality does not exist unless it too is observed by the physician. Even when observed, however, if that observation cannot be validated by some objective test, then the physician is forced to dismiss his original insight and attribute the suffering to some errant ephemera, typically of the psychological nature.

Inasmuch as women’s symptoms were never ‘seen’ in the first place, never investigated, never documented, never even considered really, then it is to be expected that they would not be believed. Women’s health problems just do not exist, in much the same way that the tree falling in the forest does not. They are immaterial, incorporeal, or as Freud suggested, ‘hysterical’. (Admittedly though, Freud listened to female patients. He simply misattributed what he learned to the machinations of the female mind never envisioning a physical culprit for their ailments.) While this in no way excuses the egregious ignorance about women’s health issues that permeates modern medicine, it does shed light on why it exists. It is a consequence of establishing a system of knowledge based solely upon the perceptive abilities of a specific group of individuals. In this case, male physicians, but one could argue, that any system predicated upon perception and perception alone would have similar limitations (see here or here).  If awareness predicates or defines existence, then no matter who is in charge, a good chunk of reality, even medical reality, is immaterial, and thus, unimaginable.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter.

Image: Wellcome Collection gallery (2018-03-29): https://wellcomecollection.org/works/h5njm9mw CC-BY-4.0

This article was published originally on January 8, 2019. 

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Hormonal Birth Control Solves Everything Right? Wrong.

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Hi, my name is Jess, I have two children, whom I gave birth to at age 17 and 19. This saved me in ways I could write a book about. I also had one miscarriage. Members of my family have a history of gynecological problems and some of them struggle with fertility. I also was at high risk for hormonal problems due to my strong family history. What I did not know, was just how limited doctors’ understanding of menstrual and hormone problems was. For every problem I presented with, hormonal birth control and painkillers were the answer. When those didn’t work, surgery. I had 10 operations in the span of a few years, until finally and out of desperation, I had a total hysterectomy in my twenties. I cannot help but wonder if the Depo Provera prescribed to me after the birth of my second child was somehow the root of my illnesses and all of the other prescriptions for hormonal birth control added and worsened my pain. It seems like I was in vicious cycle. Here is my story.

Hormonal Birth Control, Pain, and the Long List of ER Visits and Unsuccessful Surgeries

Depo Provera: The Beginning of My Pain

At my 6-week post birth check-up for my 2nd child, the doctor I  recommended that I go on the Depo Provera shot to prevent any further pregnancies. So, I did. In September 2013, after two more shots of the Depo Provera, I started having “a period” that lasted 7 months! After multiple doctors’ visits, lots of medications and tests, I was referred to my first specialist, a gynecologist.

Operation 1. In April 2014, at 20 years old, I had my first gynecological surgery: a hysteroscopy, along with a D&C and a Mirena inserted to stop the “period” I was having. The Mirena was also for birth control.

The Mirena Chronicles: More Pain and Ruptured Cyst

For the next 8 months, I had extremely irregular periods, unusual pain, and contemplated having the Mirena removed. The specialist recommended that I keep it in and see if it settles. Intercourse was painful, and after, I was guaranteed to wake up bleeding the next day. My pain became unbearable and after I had an ultrasound, they found I had a cyst on my left ovary. I was given prescription pain relief and was told they would do another ultrasound in 4-6 weeks. That didn’t happen because the pain was slowly getting worse. After two more visits to the emergency department with more pain medication, I was still told that we needed to take a wait and see approach. My health was declining. I lost 7 kilograms in 3 weeks from feeling so unwell.

Then one day I collapsed with severe sudden pain. I went to the hospital straight away when another ultrasound revealed the cyst on my ovary had ruptured. I was told I needed to undergo surgery.

Operation 2. I had a laparoscopy, so they could clean out the mess from the ruptured cyst.

Irregular Bleeding, Another Cyst, Endometriosis, and Still, Mirena is the Solution

A couple months went by and my pain once again returned. I still was having irregular bleeding and was still guaranteed to be bleeding after having intercourse. It was like déjà vu. Unfortunately, I was back on pain killers and an ultrasound revealed another ovarian cyst. The pain was often unbearable. Off to the emergency department again. Multiple pain medications didn’t seem to be working and I was told I need to deal with it as there was nothing they could really do. I thought “Are you serious?!?! Why the hell won’t you help me?!?!” I was a mess.

At every hospital visit, I got the “Oh you are on a lot of bad medication; you shouldn’t take so much.” So I would ask “can you please do something? I don’t want to keep shoveling pills down my throat!!”. However, every time the answer seemed to be “here are some more medications for your pain because we can see you’re in a lot of pain and your vital signs are showing you are in a lot of pain”. This wasn’t providing any sort of solution to fix my pain and being told to suck it up and get over it, by one doctor, didn’t help either. I couldn’t help but feel depressed and severely anxious every time I needed to go to the emergency department. I was in so much pain I didn’t know what to do. When did I become a person who needed multiply prescription medicines to control the pain enough that I could function semi-normally? At one point, I weighed only 48 kilograms. I had lost 10 kilograms. I could barely eat. Every day I tried to stay positive, but it was so hard being consumed in pain 24 hours, 7 days a week.

Operation 3. I had another laparoscopy on the 1st of May 2015, where I had the cyst removed from my left ovary. This is when they told me I had some endometriosis. They inserted another Mirena as a treatment option. It seems as though, birth control and pain killers are the only answers that they have.

Rinse and Repeat and Repeat and Repeat: More Hormonal Birth Control and More Surgeries

By September 2015 the same thing happened again, another large cyst, given away by the extreme pain and accompanied by the irregular bleeding! Another round of multiple hospital visits and admissions, I was again put on really strong pain killers and we discussed treatment options. I was prepped for a procedure called an aspiration and drainage, but my bowel and bladder were collapsed over, and they couldn’t perform it.

Operation 4. On the 24th September 2015, I had another laparoscopy. Another large cyst and more endometriosis were removed. After surgery, I was placed on a different birth control pill, along with the Mirena IUD, as a treatment option for the reoccurring cysts and endometriosis.

By January 2016 my pain had once again come back, and I was admitted to hospital. The result showed that I had another cyst on my left ovary. (Seriously, WTF!!! So many more tears). They told me they didn’t want to do any more operations on me, and I sure as hell didn’t want anymore. I was now 22 and felt like I was failing as a mum and person because I was always so consumed in pain. There were days where I couldn’t even leave the house. I had the Mirena removed again and was once again on pain killers. I was put on a hormonal birth control pill; a much higher dose, and we all prayed this would give me relief.

I had started to build up a resistance to any sort of pain relief. It felt like I was constantly going to the emergency department and was always sent home with more pain killers. Most of the time, the same ones I already took daily. I was going because my pain was so out of control, everyone around me was telling me to go get help, including my GP because I could barely function. Why were they sending me home on the same pain killers that didn’t control my pain? This affected my emotional state further. Some nurses, doctors and people were really kind to me, and others were extremely nasty and made me feel guilty for being in so much pain. I really didn’t want to be sent home again with no solution. “We must figure something out, please stop doing this to me!!! It has happened too many times!”

By March 2016, I was still in chronic pain and on even more daily medications. I had another ultrasound which reveal that I still had another large cyst in my left ovary. It also showed that I had nephrocalcinoisis (calcium build-up) and a small cyst in one of my kidneys, I was told this could be from long term use of pain medication but not exclusively. My jaw dropped. I had to travel to see a kidney specialist who told me it was nothing much to worry about and if it gets worse then I will be referred back. The advice from him was to ease up on the pain medication if possible and find other ways to deal with my chronic pain.

Operation 5. By May 2016, we were once again going to re-insert a Mirena to try and help my issue, however, it didn’t want to go in, so I had my 5th Operation to have it inserted on the 2nd June 2016. (Even if it was only slightly effective for a couple months that gave us time to try figure out what we were going to do). I was using a lot pain medication still, and my bleeding was happening more than it wasn’t. Once again, I was anemic and needed to take supplements to help my iron. Luckily, I never needed a blood transfusion. I had honestly lost count of the amount of times I went to my doctor’s clinic and the emergency department. I couldn’t even tell you the names of all the different types of pain relief and contraception options I had tried. I was labelled as someone who just ‘wanted painkillers’ because the amount I was on would not fix my pain. I was anxious and depressed due to my declining health. I wanted to just stop taking everything, but the pain was so much I couldn’t even move. Still around 50 kilograms and I had now been on pain relief constantly for around 6 months.

Operation 6. At this stage I was feeling worse if anything, so I had my 6th operation to remove the Mirena once again, after failed attempts to remove it in the gynecologist unit.

Going in Circles: More Birth Control, More Pain and Problems and More Surgery

By September 2016, I had visited the hospital and doctors so many times I was known on a first name basis. By this time, I had begun to research treatment options extensively and spoke to multiple people, including my gynecologists and doctor which led to me to discussing a hysterectomy. By now, I was willing to try any option to rid me of this pain! After extensive discussion it was decided that I would just have my left ovary removed because that was the most troublesome. In September 2016, we scheduled a laparoscopic Left Salpingo- Oophorectomy (Left Ovary and Fallopian Tube Removal).

Operation 7. On the 12th of October (day after my 23rd birthday), I had my 7th Operation. During this operation they found another problem. This is when I was diagnosed with pelvic congestion syndrome/ Ovarian Vein reflux and was referred to another specialist- an Interventional Radiologist.

Pelvic Congestion Syndrome/Ovarian pain reflux

“Pelvic venous congestion syndrome is also known as ovarian vein reflux. It is a cause of chronic pelvic pain in approximately 13-40% of women. Chronic pelvic pain is pain in the lower abdomen which has been present for more than 6 months. Pelvic congestion syndrome is therefore a painful condition often caused by dilatation of the ovarian and/or pelvic veins (rather like varicose veins but in the pelvis) . Varicose veins are commonly seen in the legs when the veins become less elastic and the valves that stop the blood from flowing backwards stop working. This causes the blood to pool, due to gravity, causing enlarged, bulging and knotty veins. This is also what happens to the pelvic veins in pelvic venous congestion syndrome (PVCS). This pressure results in the pain of PVCS and may also cause visible varicose veins around the vulva, vagina, inner thigh, and sometimes, the buttock and down the leg (s).”

Things went well for a short while, but the pain just got worse again. Again, I was on a lot of pain killers. I was always forced to take Panadol first if I was admitted in the ED, before they prescribed anything else.

I was referred to another specialist – an Interventional radiologist.

I drove 5 hours to see an interventional radiologist as there were none locally who could take me in the public system. I was advised by him that I should have platinum coils inserted in my ovarian veins and a foam solution to kill off a bunch of other veins. They thought the PVCS could be the cause to my pain and this treatment could prevent me from getting anymore varicose veins. He told me I am lucky that my legs and vagina hadn’t been affected yet, and that I will need to keep an eye out for this in the future.

Operation 8. I had operation number 8 in March 2017. I wasn’t under general anesthetic this time. Just a “twilight sedation” where they used my main artery in my neck to insert the coils and other treatments. Thankfully, I was out of it for most of it!! I had multiple coils inserted and who knows how many other smaller veins were treated. They wanted me to stay admitted overnight but I couldn’t do it. I was actually a bit traumatized from the whole experience. I felt extremely alone and scared down in a “big city” hospital by myself.  At one stage, they were so busy that the head of my bed was in a utility closet to get me out of the way. Unfortunately, this operation did not help my pain as much as I prayed it would. pelvic congestion hormonal birth control

Chemical Menopause, Hysterectomy, and More Medications

I was at my wits end. I was breaking down emotionally, so I reconsidered a hysterectomy even though I was only 23 years old. The gynecologist I was seeing suggested that I go into chemical menopause before I had a hysterectomy so that I could see if it would benefit my pain. So, I did, I went on an injection called Zoladex. It causes chemical menopause and it’s actually used as a treatment for breast and prostate cancer. I was told not to research it but I couldn’t help myself.

I went to a regular GP appointment, but this time came out with more bad news. The results were that I have high cholesterol, which showed in a recent blood test. The doctor was a little confused because I didn’t have any of the major risk factors for high cholesterol. Turns out, that is what chemical (surgical or natural) menopause can do to one’s body. Now I had to add another specialist to the list of doctors and it meant another trip away. He told me if you have a hysterectomy and you take out your only remaining ovary, your cholesterol treatment will greatly differ”. He told me, “what would/could happen and that I must go back after my operation, but for now it was still untreated.  So, with that news I felt like I needed to keep my only remaining ovary.

I was now seeing multiple professionals and had been seeing a gynecologist who made me regain hope. We talked about this operation multiple times over a long period of time and I was still suffering “chemical menopause” symptoms at that time, with my pain coming back worse the chemical menopause pellet started to run out. I was excited when the day finally came where I signed the papers to have a total hysterectomy. The advice I received was that I should make serious lifestyle changes to help my body. I was advised to do weight bearing exercises, quit smoking, go on Hormone Replacement Therapy and pray it doesn’t bring my pain back.

One thing that is still stuck in my mind is the line “this could take up to 10 years of your life”. I was in so much pain and I was sick of taking so much medicine that was making me sick in other ways. I really wanted to stop having operation after operation.

Operation 9. On the 2nd of August 2017, I had a total hysterectomy. I had everything except my right ovary removed. I must admit I felt strange, my belly felt empty, but I immediately felt like I had less pain.

It was the best thing I did for my pain. I felt like I had recovered from this operation fast and everyone (including myself) was amazed at how well I was doing physically afterwards. Ten days post op, I was able to stop all the pain medication I had been on! This was massive for me!!! No more pain killers! Or so I thought. My right ovary didn’t “wake up” after my hysterectomy and I began experiencing stronger menopause symptoms. I knew the obvious symptoms after having chemical menopause. This led me to the journey of figuring out and starting my first lot of Hormone Replacement Therapy (HRT). I also came to the realization that it takes up to one year to fully heal from a total hysterectomy.

I must admit this affected me mentally and emotionally more than I thought it would. Some days are so bad, they scare me, other days I’m on top of the world. I think this definitely contributed to my mental health. One of the hardest things about having mental illness is getting up and putting on ‘you’re okay face’ every day. This isn’t makeup. This is the face where you put on a smile and say, “I’m fine”, or “I’m good thanks”. Its where you hope no one sees past your bulls**t smile because the moment they do you know you’ll break down and cry, but at the same time you just want someone to help you and help you not feel the way you feel anymore. Who knew hormones can mess with your head so much? Who knew hormones play apart in so many different things in your body?

Operation 10. On the 28th of June 2018, surgery number 10 happened. I had my right ovary removed. I had another cyst that was complex in nature and which was making my pain worst, contributing to me being back on pain killers again full-time. They also saw that the coil that was cut during my hysterectomy was exposed at the tip, so they trimmed this up as well. hysterectomy at 23

Surgical Menopause: Medicine’s Only Other Solution

After this operation, I “officially” entered surgical menopause. I have learnt what surgical menopause really is, and how much it differs from natural menopause. I also learned how under-educated people are regarding this condition, including some doctors and specialist. I didn’t know this was the journey I was going to be on for the rest of my life, however, I have learned that I am my only and best advocate. I still suffer from chronic pain every day, and now I have an added stress of menopause. All I can do is stay strong and true to what I know and keep fighting for myself and women like me. I will continue to try and get better health care for myself and I will not give up until I am satisfied, I have achieved this. This is not how my story ends.

Thank you for taking the time to read my story. Kind Regards, Jessica Poland (Firth). Queensland, Australia.

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If you have had similar experiences with hormonal birth control and/or medications and surgery, write and share your story on Hormones Matter.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter. 

This article was published originally on November 29, 2021. 

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Conquering the Uterus – Trends in Hysterectomy

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Every 10 minutes, 12 American women lose their reproductive organs, every day of every year. Hysterectomy is second only to cesarean in common surgeries. Approximately 660 women die each year in the United States from complications related to hysterectomy. Thousands more suffer long term side effects associated with oophorectomy – removal of the ovaries. The most common reasons for hysterectomy include:  uterine fibroids or rather the menorrhagia, heavy bleeding associated with the fibroids and endometriosis, an incredibly painful condition where uterine tissue grows outside the uterus. Both conditions are hormonally modulated, plague millions of women and take years to develop.

One would think that with such extended period of disease progression, 5-10 years, researchers and clinicians would have ample opportunity to develop innovative treatment protocols, long before the surgical removal of the uterus was necessitated. One would be wrong. Despite the cost of long term care leading to, and as a result of the hysterectomy; despite the outcry from the hundreds of patient associations, some with high profile members; despite the billions of dollars spent annually on performing what should be last resort surgeries, there has been no innovation in diagnostic tools for these conditions and no new therapeutics for women’s reproductive health developed in over 50 years, unless you call the re-purposing of old meds innovation.

Instead, innovation in women’s healthcare, much like American healthcare in general only magnified exponentially, comes at the end of the disease progression – when no other choice but surgery exists. Let’s build a cool robotic tool to remove even more uteri. Sure it will cost significantly more and have a higher complication rate, but the technology is so impressive that does not matter. Forget about developing early diagnostics and less invasive, more effective therapeutics, just take it all out and look cool doing so. Who would not want to perform surgery remotely with a million dollar piece of medical technology? Women don’t need their uteri anyway – a win win for all involved.

Robotic Assisted Hysterectomy

The robotic, joystick controlled, remote surgical tool is an impressive piece of engineering. With a price tag of over a million dollars per, it provides the cutting edge stature that all top-notch hospitals strive for. An added bonus, it makes gynecology, the long derided medical profession, the cool kid on the block. But does it work?

Well, not really. Sure it removes a woman’s uterus more quickly and with less scarring; a single ½ inch belly button scare versus two or three ½ inch abdominal scars, but it costs more and doesn’t reduce complications – may even increase them a bit. Compared to the minimally invasive laparoscopic hysterectomy, the robotic assisted hysterectomy costs $2000 more per procedure. As of 2010, about a quarter of all hysterectomies were performed robotically. That’s about $300 million dollars per year more to perform a robotic hysterectomy with no added gain health.  When combined with the costs multiple hospital stays, ineffective therapeutics and possible other surgeries that often led up to the hysterectomy, it is clear why women’s healthcare is so expensive.

Perhaps we could use our health dollars a little more wisely. Maybe we should spend some of those many billions of dollars or even a fraction of the $300 million spent annually on robot surgery, on prevention, early diagnostics or more effective therapeutics.

Update

Since this article was originally published in 2013, additional reports of complication rates for robotic surgery have been published. In a study of 298 patients undergoing robotic hysterectomy published in 2015, the complication rate was 18%. In 2017, a study of complication rates of a single surgeon using the robot, was 5.5% suggesting that some surgeons are better with this tool than others. In comparison, a study looking at 4505 hysterectomies performed by the same team between 1990 and 2006 (3190 were performed by laparoscopy, 906 by the vaginal route and 409 by laparotomy) saw the complication rates below 1%, significantly lower than that of the robotic surgeries, but again demonstrating that the skill of the surgical team is paramount.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter. 

Photo by Sander Sammy on Unsplash.

This article was published originally on March 18, 2013.

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Undiagnosable or Sustained Ignorance?

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Over the last several years, I have born witness to immense human suffering; young women wracked by pain, with organs diseased, struggling to survive; some have seizures and brain infections are common; many have nerve damage, some develop cancer, and others die; sometimes by their own hands, so desperate for relief that suicide seems like a legitimate option, and other times by the cumulative effects of bad medicine.

These women are poked and prodded by physicians, hospitalized for extended periods, surgery after surgery, failed treatment after failed treatment, with no hope in sight. Their pain grows. Their symptoms worsen. Their suffering continues. In many cases, they are dropped by their physicians because their conditions are too complex to understand and too difficult to manage. They are undiagnosable, often untreatable, and their struggles are mostly invisible to the public.

They are your sisters, your mothers, your wives, your daughters, your girlfriends and colleagues. They are the 50% of the population that medical science ignores and the pharmaceutical industry preys upon. They are women. This is their story. And as a woman, a mom, a scientist and an advocate for women’s health– this is my story too. As a human being, how can it not be your story too?

Let me point you to the personal stories of the women I work with. Many were healthy once, prior to a medication or vaccine adverse reaction or ill-conceived surgery or surgical device. Some were not so healthy, suffering from one of the many undiagnosable women’s health conditions. But all of the women I work with have one thing in common – they fell victim to the promise of medical science. They believed that their doctors understood the effects of the drugs they were prescribed. They believed in the surgical treatment their doctor suggested. They believed that their doctors could find the source of their pain and treat it. They were wrong.

Meet Alisa, Alexis, Nicole, Britt, Nina, Ashley, Tracie, Susan, Danielle, Michelle, Kerri, Rosemary, Jordan, Philippa, Lisa, Angela, Kelsey, Rachel, Roxie, Rosalie, Heather, Jill, Louise, Sydney, Suki, Destini, Lisa, Emily, Debra, Patti, BJS, Joan, HollyMAK, DES Daughter, Lisbeth, Robin, WS, Sarah, Zoe, Gabriella, Erika, Janet, Yuka, Sharne, SWC, Stacey, Bette, Amber, Momoka, Yumi, Dorothy, Samantha, Kristin, Katelyn, Jean, Sarah M., ErikaCharlotte, Kerry, Sharon, Taylor, Brandi, Alisen, Jess, J.H., Alex, Sandra, Theresa, Ann, Connie, Jessica, Kristyn, Bernadette, MJ, Marit, Alyson, Detrease, Claudia, Kristen G., Annie, Rebecca, Grace, JuliaBrooke, Anna-Karin, BrittanyKristen S., CS, Asha, Anne, Leslie, Sharida, Lisa P., Daniel’s wife, AnnieJMR, June, Lisa MH, Casey, Margaret, Nicole, Stacey R., Stephanie, Karen, and all the men and women who shared their stories anonymously and the millions of others suffering in silence.

I have come to realize that their suffering is not uncommon. It is not a fluke. They are not the outliers of modern medicine; rather, they are the norm. Perhaps, the details of a particular story change somewhat, but every woman (and more and more men) has a health story; one that is marked by unending medical confusion and half-witted diagnoses based, not on a deep understanding, but on wild-assed guesses levied by pharmaceutical marketing. Indeed, if the illness does not have a medication then, in the eyes of all but the most progressive physicians, it does not exist. That may explain why the prevalence of medically unexplained symptoms ranges from 25-75% in outpatient settings, with pain being the most common.

Worse yet, when a medication elicits an adverse reaction, especially one that is chronic and complex, the patient is left to fend for themselves. It takes decades for recognition that a medication or vaccine might evoke complex reactions beyond those associated with anaphylaxis. The statistics for women’s healthcare back this up.

Did you know that it takes 5-10 years to diagnose common women’s health conditions and that once diagnosed there are often no medications or effective treatment options? You’d think that that since the development of modern medicine, someone, somewhere, would figure out how to diagnose and effectively treat some of these conditions? You’d be wrong.

Did you know that only 30% of Ob/Gyn Clinical Practice Guidelines are based on actual data – 70% are based on consensus? Sit with that one for a minute. You’d have a better chance of getting an accurate diagnosis with a dartboard.

Did you know that before the mid-1990s, women were prohibited from being in clinical trials – meaning that no medications developed before then were ever tested on women? Hundreds of medications currently on the market were developed before women were permitted into clinical trials.

Did you know that even today women represent only about 30% of early clinical trial participants? It is in the early trials that safety and efficacy data are established. Not even female rodents were used in testing drugs that would be used in the female population until 2014.

Did you know that even when women are included in clinical trials, there is no mandate to analyze the safety or efficacy data by sex – to see if a particular medication causes more adverse reactions in women, or even works in women? It took 20 years to realize Ambien dosing for women was different than for men. And by different, I mean, it should have been half. For the twenty years this drug was on the market women were over-dosing because no one bothered to consider sex as a variable in pharmacokinetic research.

Did you know that women account for disproportionately more serious and more frequent adverse reactions and that most of the major drug recalls in recent history were due to the adverse events experienced by women?

Nope, you probably didn’t know that because it’s not common knowledge. Unless, you are one of the millions of individuals suffering from an undiagnosable, untreatable, unknowable disease or adverse reaction, then it is all too real.

And though I focus of women’s health, men are not completely risk free. The British Medical Journal reports that when 3000 commonly used medications were reviewed, less than 50% had the appropriate data to suggest any efficacy whatsoever. Worse yet, because of publication bias, fraud, and the closed clinical trials system allows pharmaceutical companies hide their negative results behind the walls of intellectual property, when already approved medications are re-evaluated using the previously closed trial data, the recommendations for use changed for 93% of the medications – 93%. For cancer drugs, efficacy could be confirmed in only 11% of the studies reanalyzed. That’s just wrong. We can do better. We must do better.

As I rattle off these stats, you might be thinking to yourself, ‘but Chandler, those adverse reactions, those drug side effects are rare, they wouldn’t, they couldn’t, happen to me or my family, we’re healthy.’  Think again.

According to the Mayo Clinic, 70% of all Americans take at least one pharmaceutical chronically, 50% take two, and 20% take five or more medications, even during pregnancy where 80% of women take at least one medications and 30% take four or more, an increase of more than 60% over the last 15 years. And don’t get me started about administering vaccines to pregnant women under the auspices of protecting the fetus. There are no data suggesting that a vaccine during pregnancy is anything more than a toxic cocktail that both mom and fetus have to survive, and many do not. None of these medications or vaccinations have ever been tested for safety or efficacy during pregnancy, read the package inserts. Similarly, infants, children and adolescents represent key demographics for pharmaceutical marketing and once again, only 10-20% of pediatric medications were tested on children. We have no idea what illnesses we are initiating by our overuse of medications and vaccines. None. And therein lies the problem.

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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This article was published originally on October 31, 2017, and as one might expect, the list of women who have suffered at the hands of sustained ignorance has grown considerably. 

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Reframing Maternal Health: How Do We Know What We Think We Know?

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I had the great pleasure of speaking to the Washington Alliance for Responsible Midwifery (WARM) recently about re-framing the concepts around maternal health and understanding the biases in medical research. One of the great questions that has been occupying my time lately is understanding how the frameworks for understanding medical concepts emerge. Shorthand: how do we know what we think we know? Below is an annotated and somewhat edited (for publication) version of the talk I gave. Enjoy.

What is Health?

When we think about health and illness, we all think we know what they are. We can see, touch, and measure health and illness in some very discrete and obvious ways. For example, in Western culture thin is good, fat is not good. If one is skinny, one must be healthy whereas if one overweight, one must be unhealthy.

Weight is a key parameter by which we all shorthand our assessment of health and illness. Indeed, weight, along with other visible qualities, like pallor and disposition, and some less immediately visible but easily measurable qualities like blood pressure, glucose, and other standard labs are key indicators that define health versus illness.

More often than not, however, our definitions of health and disease have been guided by external forces and systems of thought that are inherently biased, even though they claim the objectivity of science and evidence. These biases not only impact our views on health and illness, but in many ways, define what questions are acceptable to ask about health and disease.

Perinatal Mental Illness: An Entrenched Framework for Maternal Health and Illness

In my own research on perinatal mental illness, the prevailing wisdom was and still remains focused on questions that frame the discussion incorrectly. What I mean by that is the original ideas that initiated our notions of what causes postpartum mental illness – the change in progesterone and the estrogens – have become entrenched. Indeed, the ideas that the symptoms are a standard clinical depression or somehow a more serious degree of baby blues and tearfulness are well established.

When you think about pregnancy and postpartum, there are huge hormone changes, progesterone and estriol and estradiol being the most obvious, so it was reasonable to begin looking there. The problem is that, more than not, these hormones were never measured and when they were measured in association with depressive symptoms there were only weak correlations, if any correlations at all. After a while, one would think researchers would begin looking elsewhere, other hormones, other symptoms, but they didn’t. They just dug in deeper. The framework for perinatal mental health issues had already be set and to deviate was difficult at best, impossible for many.

I came to this conversation as a lowly graduate student. I thought, let’s look at other hormones and other symptoms, not just depression, and see what happens.

Lo and behold, other hormones were involved, as were other symptoms. But again, the framework was established and so the idea of expanding definitions of perinatal mental health, especially by someone who wasn’t a named researcher, was not a positive one.

The research was rejected over and over again and the politics of the maintaining the framework and only incrementally changing it were made quite clear to me, repeatedly. So much so that those controlling the dialogue were willing to dismiss where the data pointed to in order to frame the conversation as conventionally accepted – that progesterone and estrogens caused varying degrees of depression postpartum. Even though this made no sense logically; if this were the case, all women would be suffering and they were not. There was no supporting data, but it didn’t matter because as one reviewer commented about my research – ‘that is not the direction the hormone research is going’. So much for unbiased science.

This experience, added to my already disquieted disposition, led me to always dig deeper and look at the frameworks through which the research or ideas were being proposed. These are more philosophical questions, and yes, I have a degree in philosophy so I am naturally inclined towards these – but I think it is important to question how you know what you know and how others know what they know; those rules of knowledge determine, in large part, what can be known in a public sense, and will lead to tremendous insight in your practice – especially when what is accepted as standard clinical practice – doesn’t quite mesh with the patients in front of you. Dig and figure out what the framework was that developed those particular guidelines. Was it valid, was it commiserate with modern patients and current health issues or was it something that was skewed to begin with and has become increasingly more skewed – but we’re holding on to the practice anyway because it has become just the way we do things.

It’s a big topic – one where women and childbirth should play central roles but historically, we have been left out of the conversation.

Historical Frameworks for Maternal Health

To give you some context about how the frameworks impact clinical practice, let us consider the evolution of modern medicine. Historically, medicine has asserted the primacy of the physician’s ability to ‘see’ and thus, identify illness, over the subjectivity of the patient’s perspective about his or her health. So much so, that patients need not even speak unless spoken too and may only aid the physician to the extent they can answer those questions that the physician is interested in.

To say this has been a paternalistic approach is an understatement. Within this model of the physician as ‘seer’ and interpreter of signs and symptoms there is no room for the patient and his or her interpretation of the illness – especially her interpretation.

Despite its flaws, however, in many ways, this was a net positive for medical science. It allowed medicine to progress, for diseases to be systematically recorded and discussed – amongst other physicians of course – but still a critical step forward in medicine. Most importantly, this framework allowed medical science to begin developing treatments to specific diseases.

On the most basic level, one cannot manage a condition unless one can measure it, and to measure it, we have to be able to identify it and distinguish it from other diseases. And herein, lays much of problem with general women’s health and maternal health: what to measure, how to measure and what those measurements meant were largely decided by men who had no lived experience of ‘women’s health’ save perhaps, an observed experience with mothers, wives, sisters – which for all intents and purposes because of the political and cultural norms – women were separate.

So, the framework for women’s health, and most especially, maternal health was fundamentally flawed and inherently biased – from the onset. No matter that midwives had been delivering babies for generations and had built a wealth of knowledge – their influence, and power was usurped by physicians and that knowledge was summarily rejected. In its place practices and technologies that, in many cases, did not benefit women. Indeed, from the early 20th century onward, obstetrics considered childbirth a pathogenic condition requiring medical intervention.

Since within this model the patient had no role in either diagnostics or treatment consideration, but lay simply in front of the physician for him to ‘see’ and interpret the signs and symptoms of disease, the definitions of women’s health and disease and most especially maternal health – were obviously skewed. How could they not be, looking from the outside in – framing the questions from a distance?

Consider that not only were the very questions asked about women’s health defined by men, but the research subsequently, if it included women at all, was guided by the false presumptions that women were simply men with uteri.

And I should note, that women were summarily excluded from research until the late 1990s – so everything we know about medications prior to the 90s was based upon research with men, generally, young, healthy men at that.

It was believed and still held by many, that except for reproductive processes, men and women were fundamentally the same. Once we isolate those specific functions, there is no need to address women’s health any differently than men’s health. Or is there?

Is a Woman Simply a Man with a Uterus?

As women, I think we would all argue in favor of assessing women’s health differently than men’s health.

From a physiological and biochemical standpoint, male and female bodies are quite distinct, far beyond differences in reproductive capacity. In fact, these differences are exactly because of reproductive capacity and more specifically, the hormones that mediate those abilities.

If men and women are different – and of course they are – how do we know that what we know about women’s health is in fact accurate when most of women’s health research was defined by men? Do we really know anything, beyond the most basic assessments about women’s health?

I would argue that what we know or rather what we think we know, pretend to know, especially in western medicine, may not be accurate. The questions were framed incorrectly – from the perspective that women’s reproductive capacities, organs and hormones had no impact on the rest of her health. We could probably make the same argument for men, as their reproductive organs and hormones were dissociated from the rest of their health too – but because men controlled the research, defined the research, and importantly, had personal insight regarding their own physiological functioning, health knowledge is likely more accurate than what has been conveyed about women.

Shifting Frameworks Means Changing Definitions of Maternal Health

This isn’t just about differences in human physiology. If we dig into the framework by which we understand health, if we dig into the systems at play, we can see trends in how, as that power structure, as the lens, the framework for understanding health and disease shifts, so to do the definitions of health and disease and so too does the range of acceptable and unacceptable questions to ask.

If we look at recent decades with advent of HMOs and other payer contracts, along with the growth of hospitals, we see ever changing health and disease models. The model with physician as the central and all powerful seer and knower has shifted quite significantly by financial interests producing a factory like approach to healthcare.

With any factory, efficiency and cost cutting are key indicators of success. Instituting those efficiencies, however, largely removes the physician’s authority by shifting the primacy of his views towards the more efficient and less authoritative matching of symptoms to medications and billing codes. Cookbook medicine.

If symptoms reported by a patient don’t fit the ascribed to criteria, for all intents and purposes, the illness does not exist.

The physician, in many ways and recent decades, has become no more than a well-educated, technician answering not to his or her patients, but to the factory bosses – the insurers, the hospitals, and the regulators – the bean counters.

The physician is no longer central to medical science and clinical care. He/she is in many ways an administrator of care – a provider, not a healer, not even a scientists or medical researcher, save except to proffer funding from pharma or device companies.

Physicians have no power, no say in patient care, except to the extent that they can dot the i’s and cross the t’s according to billing codes. If their gut, or more importantly, if the data tell them that a particular treatment is dangerous, or conversely, is needed, but it doesn’t fall within the ascribed treatment plan, the physician has little recourse but to comply or risk losing his/her livelihood and, in more extreme cases, his/her reputation.

We see the barrage of reputation ending slanders hurled at physicians and researchers who dare to speak up and say that perhaps pesticide laden foods are not as safe as chemical companies make them out to be or that perhaps vaccines or other medications are neither as safe nor as effective as pharma and governmental institutions funded by pharma suggest. When physicians speak up, they risk their careers and reputation.

And while, you might be thinking there might be some positives to this shift, it is no longer such a paternalistic system where the physician has total power, in reality, this shift in healthcare towards efficiency still leaves women’s health high and dry and pushes the patient’s experience of his/her illness even further from the ‘knowledge base’ of western medicine.

Who Determines What We Know about Health and Disease? The Folly of Evidence Based in Women’s Health

So, back to this idea of frameworks, if neither the physician nor the patient is central to our definitions of health and disease, who is?  Who determines what we know about health and disease?

In recent decades, clinical practice guidelines have emerged from what are called evidence-based claims. Evidence-based clinical guidelines sound like a perfectly acceptable and reasonable approach to medical science. Research should be done on clinical decisions and outcomes, the data paint a picture of the safety and efficacy of a particular treatment or approach.

Evidence-based is certainly far better than consensus based – which means the ‘experts’ agree that this approach or that approach is optimum – something that has been the norm in women’s health care for generations.

Indeed, most medications were (and are still) never tested on women, pregnant or otherwise, so clinical practice guidelines that involve medication use are developed by ‘consensus’ and what many doctors like to call ‘clinical intuition’.

But since the long-term effects of these intuitive decisions are rarely seen by the clinician whose intuition guided the initial decision, and rarely shared with others, the notion of consensus based medical decision-making becomes sketchy at best, dangerous at worst; unless, you are lucky enough to have a highly skilled and thoughtful practitioner who is able to discern and act upon the best interests of his patients, even if it means going outside the parameters of what the rest of the profession says is appropriate. Most of us are not that lucky and as women we are faced with a medical science that doesn’t quite fit our experience of health and disease.

Of Weight and Health: The Obesity Paradox

If we go back to the shorthand measure of weight as a marker of health – how many of us tell ourselves if we just lose 10lbs we’ll be healthy. Every one of us, at some point or another has fallen into the weight = health trap. While it is true on extreme ends of the weight continuum that weight is related to disease, everywhere else and for everyone else, weight has little to do with ‘healthiness’.  Weight loss has been noted to reduce blood pressure and type 2 diabetes, but the relationship is not as straightforward as it seems. Being of normal weight does not necessarily equal low blood pressure or increase your longevity. Weight is not correlated positively with mortality – death by heart attack or stroke. In fact, the relationship between weight and surviving a life-threatening disease is almost always inverse – the heavier you are, the better the chance for survival. Those fat stores come in handy when we are deathly ill.

Wait, what did I just say that?  We should all go get fat and live longer – well, not really. Rather, I think we should look beyond weight as measure of health and to more appropriate measures like fitness, quality of life and the nutrient density of the diet. If you are eating well, active and feeling good, without any need for medication, then you are healthy.

Back to our evidence based approach – How can it be that the evidence behind what are gold standards of clinical practice be incorrect?

That is a big question that involves a little more background.

We all want our physicians to make healthcare decisions based upon the best available evidence and we can all think of ways that evidence is better than consensus, but each of these methods have their flaws.

Defining the Gold Standards in Clinical Care

When we look at the gold standards in clinical practice, those that align with evidence-based care, we have ask ourselves, from where did that evidence emerge, what were the variables, populations, and other factors studied and how were the outcomes determined.

How we define a good outcome versus a bad outcome determines how we design a particular study and what we results we will show.

Recall my example of the postpartum depression discussion – if we only ever measure progesterone and the estrogens (or don’t measure the hormones at all, simply assume those changes are at root of mood and psychiatric changes) and if we only measure depressive symptoms – then we have narrowed the framework such that we will only find associations or as the case may be – a lack of associations. And if there are no associations in the data – well then the disease must be made up and not real – all in the patient’s head.

The lack of questioning of one’s own biases, of the lens through which the research was designed or the parameters of what fits within that framework necessarily limits the understanding, making it easy to blame the patient. But if we step outside the framework, and listen to the patient’s experience, believe the patient experience and let it guide us, then we can break through the limitations of any particular framework and move science and healthcare forward. It sounds simple, and it is, but only if you recognize your biases and the biases of others and begin questioning, how you know what you know. And if that is not on solid ground, re-frame the questions.

Lies, Damned Lies and Statistics

You’ve all heard the phrase ‘lies, damned lies and statistics’   – it comes from the notion that research design, and particularly, the statistics can be swayed, intentionally or unintentionally, to prove or disprove anything. In medical science, this is especially true. Pick any medication for any disease and ask yourself how we determine whether it is effective or not?

First to mind, ‘it reduces symptoms’

Sounds reasonable – but dig deeper – which symptoms? All of the symptoms? Some of the symptoms?

And then if we dig even deeper…

Who decides which symptoms are important or even which symptoms are associated with a particular disease process? Over recent history, these decisions have been controlled by the pharmaceutical companies, insurance companies and hospital administrators – each with a specific bias and vested interest. The pharmaceutical companies want to sell products, the insurers and hospitals want to reduce costs and make more money. These should be counterbalancing agendas, but unfortunately they are not. The pharmaceutical companies have brilliantly controlled this conversation, defining not only the disease, but also, by controlling the research and defining the symptoms and prescribing guidelines. (I should note they also create new symptoms and disease processes to re-market old drugs to new populationsantidepressants for menopauseantidepressants for low sex drive in women, for example. The symptoms for both of these conditions are made worse by the very drugs being prescribed.)

If institutions or organizations with a vested interest are allowed to define the disease and the research by which a therapy is considered successful, how do we judge the validity of evidence-based guidelines?

Are the assumptions about the disease and the symptoms correct? Do these symptoms apply to all individuals with the disease or only those of certain age group? How about to women versus men?

Treatment Outcomes Determine Product Success or Failure

Take for example the case of statins, like Lipitor or Crestor, some of the most highly prescribed drugs on the market designed to lower cholesterol – because cholesterol was observed to be associated with heart disease in older men, particularly those who have had a heart attack previously.

Reducing cholesterol in this particular patient population might be beneficial to improved longevity (although, that has been questioned vigorously). However, does the rest of population benefit from cholesterol lowering drugs? It depends upon what outcomes are chosen in the research. If we, look at decreased mortality and morbidity as an outcome, then the answer to the question is no, statins are not good for the entire population with high cholesterol. A healthy diet and other lifestyle changes would be better.

Indeed, in women in particular, these drugs are dangerous because they increase Type 2 diabetes, increase vitamin B12 and CoQ10 deficiencies, among other nutrients (which initiates a host of devastating side effects), and most importantly, statins may increase the risk for heart attack and death in women.

So the drug promoted as one that prevents heart disease, may worsen it in women. Not really a tradeoff I would take.

This is problematic if one’s job is to maximize product sales. What do you do?

Let’s change the outcomes to the very simple, lowering of cholesterol. No need to worry about extraneous details like morbidity and mortality, keep it simple stupid.

Also, no need to compare the health of women versus men. Indeed, outcome differences between women men and women are rarely conducted, since statins decrease cholesterol in both women and men. Outcome achieved, evidence base defined, built and promoted.

A couple of points here…

He who defines the research design, controls the results. Across history, patients, especially women, have had no impact on these variables.

First it was the physicians, mostly male, and more recently, the product manufacturers have controlled the very definitions of health and disease, which in turn, determine treatments. To say evidence-based medicine is skewed is an understatement.

Now what?

While I’d argue that we have to re-frame the entire conversation about women’s health and include more voices in that conversation, voices that may not have been heard previously. I would also argue that we are never going remove biases from research and decisions about health and disease, but we can understand them and maybe even use them more effectively.

Revisiting the Foundations of Maternal Health – Enter Obstetrics

In maternal health, consider the Friedman curve and the failure to progress, though certainly not a product based bias as discussed previously, the Friedman curve, created in the 50s by a male physician at the height of hospitalized birth, where hospitals had a vested interest in understanding the progression of labor and its relationship not only to physician efforts, but time and outcome. For generations, this one study has guided OBs in their decisions to expedite labor – and as much research has found – has led the unheralded increase in cesarean delivery. Why?

One could argue that the study was flawed – it was – but most research is flawed in some way or another. I think the important thing is to understand the biases, how the question, and therefore, the answer were framed, and as importantly, who made the decisions about what was important in the framing of question?

Begin with the study population, was it skewed? Yes, it was.

For the Friedman study, more than half of the women had forceps used on them during the delivery (55%) and Pitocin was used to induce or augment labor in 13.8% of women. “Twilight sleep” was common at the time, and so 23% of the women were lightly sedated, 42% were moderately sedated, and 31% were deeply sedated (sometimes “excessively” sedated) with Demerol and scopolamine. In total 96% of the women were sedated with drugs. What might these drugs do to the progression of labor – stall it perhaps?

Digging deeper, consider the framework within which this study was conducted. Hospital births in the 1950s were predominantly drugged, sterile (or presumed sterile). Efficiency and scientific prowess were on the rise. Time was of the essence and there was very strong impetus to gauge decisions based upon the most advanced medical science – drugs, interventions – and an equally strong pull not to allow women to progress more naturally – because then science would not have intervened.

How did this one study become the guiding factor in obstetrical care? Why did we think that this particular study group was representative of the entire population of birthing women? The obvious answer was that women had no voice in this conversation or in the birth itself. It was medical science and intervention from a place of ‘all-knowingness.’

There was never any question that these results could be skewed, until recently. It was accepted, and perhaps the only reason questions have arisen, I suspect, is because of the links between the medical management of birth and the increasing rates of cesareans and maternal and infant mortality in the US over recent decades. Would this study have become so entrenched if the patients – the women – had a voice in the conversations about childbirth or the outcome was not so closely tied to hospital efficiencies? We’ll never know, but one could postulate that under different circumstances the study might have been framed differently and netted different results entirely.

Maternal Hypertension

Another, more recent example of how the framing of the question determines the conclusions of the research, involves how we view high blood pressure in pregnant women. Hypertension during pregnancy is dangerous for the mom – but what do we do? Treat it with non-tested anti-hypertensives, for which we know nothing about the potential side effects to the fetus short or long term ? Do we change diet? Do we simply monitor and hope for the best? What do we do? We don’t know. There is limited research on the topic, including on commonly used interventions.

With such limited research, I had high hopes for recent study, Less-Tight versus Tight Control of Hypertension in Pregnancy.  It was a huge and well-funded study with a wonderful opportunity to determine the risks/benefits of anti-hypertensive therapy, but by all accounts, and in my opinion, it failed because the questions it asked were framed incorrectly. (Or were they? For pharmaceutical companies, the study was success. More on that in a moment).

That is, rather assessing the safety and efficacy of anti-hypertensive medications used during pregnancy (remember safety data for medication use during pregnancy is severely lacking), this study investigated a very narrowly defined and essentially meaningless question. The study asked whether controlling maternal blood pressure strictly within a pre-defined and arbitrary range of blood pressure parameters provided better or worse maternal or fetal outcomes compared to a more flexible approach that allowed broader range of accepted blood pressure metrics.

It did not analyze maternal or infant complications relative to particular medications to determine whether some medications were safer than others. It did not look at dose-response curves relative to those medications and outcomes or sufficiently address the role of pre-existing conditions relative to medications and outcomes. All it did, was ask whether or not managing maternal blood pressure more or less tightly with medications (that were not assessed in any meaningful way) was beneficial or harmful to maternal or infant outcomes. Since both groups of women were on various medications, varying doses and had a host of pre-existing conditions, the results showed that both groups had complications. It did not tell us which medications were safer, what doses of these medications were more dangerous or anything useful for clinical care. It just told us that anti-hypertensive medications during pregnancy, reduce blood pressure (we knew that) and cause complications (we knew that too). My review of the study.

Now, because of way the study was framed and especially how the conclusion was framed – that both tight control and loose control of maternal blood pressure show equal numbers of complications – the message will, and already has, become – blood pressure medications during pregnancy are safe.

The study found no such thing. In fact, the study found nothing really, but because of how it was framed it now becomes shorthand evidence of drug safety during pregnancy. Only those who read the full study with a questioning mind will know that this is not accurate. Most of the population, including physicians, will see only the shorthand PR surrounding the study and assume drug safety.

Conclusion

In conclusion – I want you to go back to practices and think about how you know what you know and if something doesn’t quite mesh – dig deeper – look at the framework from within which that guideline came to be. Look at the original research and decide for yourself.

I think it is time for women, midwives to have a much stronger voice in maternal health care, but to do that, we have to speak up and speak out and not accept the ‘gold standards of care’ just because they are the gold standards. While it is true, sometimes those standards will align well with maternal healthcare, other times, I think you’ll find that because of how the questions were framed, the solutions were skewed and do not match the reality of maternal health and disease.

Thank you.

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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Originally published March 31, 2015.

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