women's health - Page 9

Are We Not Worth It? OB/Gyn Decisions Driven by Consensus not Evidence

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A recent study by researchers at Columbia University uncovered what many women have suspected for years, that the clinical practice of obstetrics and gynecology (Ob/Gyn) is steeped in tradition and opinion but lacks data and evidence. The study, Scientific Evidence Underlying the American College of Obstetricians’ and Gynecologists’ Practice Guidelines authored by Dr. Jason D. Wright and colleagues found that only 30% of Ob/Gyn clinical practice guidelines were based on hard data or scientific evidence. Rather, the vast majority of practice guidelines (70%) were based on observational studies, consensus or expert opinion.  Perhaps this is why it takes 5-10 years to diagnose common Gyn conditions, why oral contraceptives are the first line of treatment for every women’s health conditions or why most pregnancy complications are still, in the 21st century, considered idiopathic.  Without data, it sure is difficult to sway expert opinion.  What do you think?
Link to the press release: Ob/gyn Guidelines Often Based Opinion Weak Data

Reference
Wright JD, et al. Scientific Evidence Underlying the American College of Obstetricians’ and Gynecologists’ Practice  Guidelines. Online in press version, September 2011, Obstetrics and Gynecology 118 (3).

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Navigating Invisible Illness in the Age of Modern Medicine

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Much has been about said about empowering and educating patients to be partners in the healthcare dance. From the e-patient and e-health revolutions through the piles of research showing more engaged patients have better outcomes, all seem to point a more active role and increased responsibility for the patient in his or her own care. But how does that work when the illness is not clearly defined, is not easily diagnosed or for which effective treatments are limited? What does it mean to be an empowered patient with an invisible illness?

This is the question that many women face on a regular basis. Indeed, for a number of predominantly female disorders, whether hormonally modulated or not, there are often many years before the symptoms are addressed as real and not figments of the female imagination. Chronic fatigue and fibromyalgia are two such examples, but so are endometriosis and an array of other perhaps more subtle hormone conditions.

During those years before modern medicine and the research community recognize the reality that define a particular disease process; during the years when women are prescribed psychiatric meds for non psychiatric conditions; during the years when pain medications with diverse side-effect profiles blur the line between the original disease and the one that is induced pharmacologically; during those years, how does one become the e-patient, the e-woman, without becoming a physician herself?

Really, we want to know.
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Women’s Hormones: An Intellectual and Ethical Cul de Sac

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Menopause is barreling down with a ferocity that is difficult to ignore. Like many women my age, I’ve had my share of health challenges and, until recently, blindly trusted the pharmaceutical industry to fix all that ailed me. Health by chemistry was a great thing; oral contraceptives, a fabulous invention, allergy meds – ditto, pain killers – wonderful, and on, and on. Take a pill and feel better, isn’t that what we all want? But I, like so many women, have lost faith in pharmaceuticals. It’s not because the science isn’t cool, it is, in every area of pharmacology, except women’s hormone therapies. Here, intellectual curiosity and innovation have been replaced by status quo. Little has changed in this area of hormones and health in 60 years.

Hormones, Hormones, Everywhere and No Innovation in Sight

Since their inception, hormone replacement therapies (HRT) and oral contraceptives have dominated women’s health, immediately moving from seemingly narrow applications when first introduced to the almost mythical status as cure-alls for any female and many general health ailments. The history of both these pills is strikingly inglorious and utterly dumbfounding. Just on general principle, why would anyone believe any medication could be so widely beneficial for so many apparently disparate conditions? It is physiologically impossible.

For HRT especially, if one believes the marketing, the pills provide a veritable fountain of youth. Where is the science? But believe we did, and generations of women may now be paying the consequences.

From the very first estrogens synthesized and marketed to women everywhere (diethylstilbestrol- DES), through today’s HRTs and OCs, profit appears to override health concerns. Even in the 1930’s and 1940s before these drugs came to market, the carcinogenic risks were well known, and yet, they garnered FDA approval and were sold to millions, upon millions of women.

Synthetic Hormones

I have personal experience only with the often ignored side effects of oral contraceptives, as I have yet to reach the age of menopause. In my 20s, while on the presumable high estrogen dose of oral contraceptives that were common then, I had intense bouts of vertigo that would develop even when lying down and ever increasing blood pressure. After years of expensive testing could find no neurological cause for the vertigo and after repeated prescriptions to lower my blood pressure, I stopped taking the pill. I had enough. The vertigo stopped fairly soon thereafter and the blood pressure returned to normal. Over those several years, there was not a single physician that suggested I stop taking the pill, indeed I was prescribed more and more meds to counter the apparently unknown side effects of oral contraceptives and it was recommended I see a shrink because the vertigo had to be psychosomatic.

I look back at that time and I wonder how many other women suffered similar circumstances. What is this propensity to prescribe and continue prescribing medications in the face of apparent ill effects? Why are we ignoring, even at the patient level, the possibility that some meds may not work for some women (or men). The statistics bear this out, but there seems to be a natural inclination to minimize these risks. This is compounded of course, by intense marketing.

As I approach this menopausal stage, I again will be faced with yet another hormone-issue for which the choices are bad and worse. We know from the Women’s Health Initiative (WHI) in 2002, that HRT is not the panacea it was marketed to be and the risks associated with this medication are not benign.

Over a one year period, for every 10,000 women taking and estrogen plus progestin, the risk of developing these conditions increases by:

• Heart disease: 7 additional cases
• Breast cancer: 8 additional cases
• Stroke: 8 additional cases
• Blood clots: 18 additional cases

For estrogen only:

• Stroke: 12 additional cases
• Blood Clots: 6 additional cases

Consider however, the millions of women who will take or have taken HRT for years. As of 2010, over eight million women in the US alone take HRT, and will likely do so for at least a couple years. In this light, the increased risk of disease looks a lot scarier.

• Heart disease: 5600 new cases per year; 28,000 in five years
• Breast cancer: 6,400 new cases per year; 32,000 in five years
• Stroke: 6,400 new cases per year; 32,000 in five years
• Blood clots: 14,400 new cases per year; 72,000 in five years

When the WHI was published, some 17 million women in the US had been taking HRT for many, many years, even decades. That’s 13,600 new cases of breast cancer per year, 68,000 in five years! Despite these data, and the thousands of lawsuits that followed, HRT is still one of the most frequently prescribed medications worldwide. I think we can do better.

Statistics from the Mayo Clinic

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Every Man Knows a Woman with Hormones

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Chandler-2011

And we all have hormones. Those wonderfully mysterious chemicals circulating and cycling with the regularity and rapidity that makes one’s head spin, female hormones are at once the bane and the joy of man’s existence. Our hormones are what make us find you attractive, laugh at your jokes, date you, sleep with you and bear your children. Our hormones can also turn us into stark, raving lunatics at seemingly benign comments. Most men know and understand this, at least intuitively. You are prepared for the ‘wrath of raging hormones’ if not from direct experience with your mothers, sisters or girlfriends, then from the many locker room and sitcom epithets ever present in modern culture.

What most men (and many women) are not prepared for, and I’d venture don’t understand, is the very real chemistry changes behind the wrath. Much of this goes far beyond just mood changes, often eliciting a bevy of symptoms and disease processes that we’re only now beginning to understand.

In many ways, hormones are just like every other chemical circulating in our bodies, regulating this system or that, entirely responsible for certain functions, secondary and tertiary players in others. Men have the same hormones as women, just in different concentrations. And hormones cycle in men, but not so radically and regularly. What is different between ‘men’s hormones’ and ‘women’s hormones’ is not the hormones themselves, but the systems and structures on which they operate and the reproductive functions that ensue.

To state the obvious, women have ovaries and a uterus. Those structures, along with the brain form the foundation of a beautifully orchestrated and incredibly complex chemical feedback system that not only controls reproduction, but influences just about every aspect of our lives. Estradiol and progesterone concentrations increase several fold across an average cycle, preparing the uterus for a possible pregnancy. In the absence of pregnancy, hormone levels plummet and the lining of uterus, the endometrium sheds. The all-too-familiar mood changes and pain commence.

As a man viewing this process from the outside, it is difficult to appreciate the magnitude of hormone changes affecting the women in your life. When hormones act on the brain or in the body, they do so in much the same manner as many common drugs. In terms of chemistry, menstrual cycle hormone changes are very similar to a drug addiction/withdrawal pattern with increasing dosages of stimulants (like amphetamines) during the first two weeks, a combo pack of sedatives (like Valium or alcohol) plus a few stimulants during the second two weeks, followed by cold turkey withdrawal. Rinse and repeat, over and over again, approximately 450 times during the course of her lifetime. Pregnancy and postpartum follow the same pattern only the dosage of hormones, the duration of exposure and the magnitude of the withdrawal are increased exponentially. The veritable cocktail of hormones that make these functions possible is breathtaking.

What happens when one or more of these chemical messengers gets a little out of sync and the system become dysregulated, as is inevitable in any system that cycles so frequently? Or what happens when an illness or disease, maybe not caused by hormones, develops in the context of this ever fluctuating female chemistry? You get a bit of chaos (think butterflies, not randomness).

As a man, who has women in his life, you have two choices, ignore and avoid the chaos and hope there are no storms on the horizon, or embrace the chaos and find ways to anticipate and alleviate the pain. Many choose the former, including much of medical science. This is the avoidable ignorance, I wrote about last week. I’d like to think the men who love us, choose the latter. Certainly, the men who shared their wives’ and daughters’ stories recognize the need to investigate and develop better treatments for women. They may not understand fully the complexity of women’s hormones, but they understand the suffering, sense that symptoms are being ignored and want nothing more than to make it all better.

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Avoidable Ignorance: Implications for Women’s Health

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It is difficult to read the stories of suffering expressed by the women featured in our blog and not become incensed. We can joke about women’s hormone health and deride the science to fringe status, but our failure to recognize, investigate and create options for women has serious consequences. In my mind, this is an avoidable ignorance.

I borrowed that phrase from a quote by Dr. Albert G. Mulley, the new Director of the Dartmouth Center for Health Care Delivery Science. The full quote “no decision should be made in the face of avoidable ignorance” speaks volumes about the state of women’s health care.

How many women have sought treatment for a dysregulated menstrual cycle, menstrual cycle related pain, or other presumably hormonally modulated events only to be sent home without so much as a lab test but with oral contraceptives? Worse yet, how many women have had an endless array of invasive procedures only to receive an uncertain diagnosis and oral contraceptives. This is avoidable ignorance.

Why don’t women get routine hormone testing for what are presumably hormone related conditions? We wouldn’t treat high blood pressure without first measuring blood pressure or diabetes without first measuring glucose. Why then would we treat presumably hormonal conditions, with hormone modifying drugs, without ever measuring hormones before or during treatment? Is the pill so successful at treating all female symptoms that no testing is ever needed? Or is there some avoidable ignorance at play? Judge for yourself.

The most common arguments against hormone testing include:

1. The clinical reference ranges for hormones are too broad to be useful
2. The test results will not modify clinical decision making, so why test
3. Hormones are too complicated and variable
4. A good clinical interview suffices

It’s not that we cannot develop more robust hormone reference ranges, more sensitive hormone testing methods, perhaps link a woman’s unique biochemistry to her clinical symptoms, we just have not. The often repeated excuse that ‘hormones are complicated, variable and too difficult to analyze’ just doesn’t hold true given the state of science and technology today, neither does the clinical interview argument. A good clinical interview is always important and maybe even a lost art in this era of high tech diagnostics, but wouldn’t it be nice if the average time to diagnose some of these conditions wasn’t 5-10 years?

This brings me back to Dr. Mulley and his discussion on ending avoidable ignorance in healthcare. The responsibility, Dr. Mulley contends, rests with the patient. As a supporter of the e-patient movement, Dr. Mulley believes patients have the responsibility to educate the physicians and other decision-makers about what’s important to them. He says “unless we know what you care about, we have no information to inform investment or disinvestment” in any particular area of health.

In this context, it becomes clear, that maybe as patients, we have failed to own up to some of our responsibilities. Menstrual cycle disorders are uncomfortable to talk about. Who really wants to talk about never ending periods or blood clots—that’s just gross. And pain, one shouldn’t whine about menstrual pain, it’s unbecoming. Then there is the brain fog, fatigue, moodiness— all part of being a woman, or at least that’s what we’re led to believe. What if this isn’t normal? What if we, as women, are relegating our health prospects to ignorance? The Susan G. Komen Foundation did not come to prominence through silence, neither did the Endometriosis Foundation of America or any of the other women’s health organizations.

It is when we begin talking to each other and to our doctors that we can make it clear that these things are important; that the paucity of women’s health options is not acceptable. We need to become experts in our own health, to discern what’s normal and what’s not. We must drive the discourse, guide the research and build understanding for ourselves and our own well-being. We can’t wait for someone else to do this for us. Ignorance can be avoided.

See the full video clip with Dr. Mulley.

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Does anyone come through womanhood unscathed?

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Over the weekend, as my colleagues and I were putting this issue together, we began talking about the hormone stories that were crossing our desks. More often than not, the women submitting these stories describe years of pain, suffering and uncertainty. In some cases, lab tests were done, in others they were not or not until years later. Inevitably, each woman was placed on oral contraceptives, sometimes for markedly different symptoms, and sent home, repeatedly. For most, oral contraceptives were not effective and in some cases, significantly exacerbated the conditions for which they were prescribed.

Gradually, each of us began to share our own health stories and those of our friends, sisters, mothers and daughters. It’s not that we hadn’t shared our stories before. We are, after all, a bunch of women working on women’s health issues. We talk about everything. Before this weekend, however, I don’t think any of us understood the depth of experience uniting us in this mission. There was not a single woman in the room or in our immediate friend or family circle who did not have a hormone health story. And these were not benign complaints of moodiness or feeling hormonal, those are a given. Rather, most of us and everyone we knew had experienced serious, often chronic, life-changing, presumably hormonal, health events. Many of us have had multiple surgeries.

This left me wondering, does anyone come through womanhood, unscathed? Is it just the nature of being a woman and having a uterus that predisposes us to these many ailments? In other words, is this normal? Statistically, apparently it is.

When epidemiological data are added up, most, if not all women, can be expected to have at least one hormone-related health issue at some point in their lives, not including menopause. Many women have multiple. And even if the etiology some of these conditions is not entirely hormonal, it’s a given that hormone cycles or synthetic hormones will moderate the condition in some manner. Which brings me to my second question; could these health issues be prevented?

At the moment, no, because we simply do not measure, attempt to predict, or manage women’s hormone health and disease in any discernible manner. Why don’t we have baseline hormone measurements when girls begin menstruating? Why isn’t hormone measurement a standard part of women’s health care, like blood pressure or cholesterol? Sure, excuses abound about why we can’t or shouldn’t measure women’s hormones, but bottom line: we cannot manage or even understand what is not measured.

Then there is the question about what is and is not a hormone-related condition. Until puberty boys and girls have almost equal rates of many conditions, but after puberty there are significant, sex-based divergences in the areas of mental health, immune function and pain-related disorders, among others. These differences are often attributed to hormone differences. Of course, matters of the reproductive system are hormonal but for many diseases the hormonal connections are not as clear.

Where is the dividing line between a symptom or condition that is considered hormonal versus one that is not? If a hormone binds to a receptor on a cell and elicits a reaction that modifies the cell’s behavior, can that be considered hormonal? I would say yes. Maybe at a very basic level, many diseases, not normally considered hormonal can and do have hormonal components that we ought to be addressing.

Another question to consider, why do we label some hormones male and others female? We all have the same complement of hormones, albeit in vastly different concentrations. Women have all the androgens that men have and men have progesterone and all of the estrogens that women do. Why are we not measuring more androgens in women and for that matter, more estrogens in men?

As a woman, among many women, I am acutely aware of the limitations of current medical science. As a scientist, I am dumbfounded that the solutions have not come to fore. As mother, most especially as a mother, I don’t want my daughter to suffer the way I and so many women have and still do. The obstacles to understanding are not as complex as we think. The first step is simply being open to the possibility that there is problem that deserves a solution. When you read the stories, posted by the brave women willing to speak, consider who you know that has had similar experiences. Consider the impact telling your story could have.

It is my hope that as more women share their stories, it will become abundantly clear that this problem deserves a solution. Join the conversation. If not for yourselves, for your daughters.

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Perspective is Everything in Women’s Health

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As the economy and political situation continue to spiral with the frenetic, manic-depressive, mood swings of a toddler in the cereal aisle, the rest of us are left wondering what the…

Don’t they get it? Don’t they see what we see? Maybe not. With $174,000-$223,000 annual salaries and guaranteed health insurance that includes private personal physicians who provide routine medical care at no, or minimal charge, it is difficult if not impossible for Congress to feel the pain and uncertainty that the $38,000 per year teacher feels or that the unemployed construction worker must feel. It’s a matter of perspective and perception, neither of which seem focused on what matters most.

As the women’s healthcare debate heats up again, one can’t help but wonder if the difference in perspective is what propels statements like those from Senator Kyl earlier this year: “I don’t need maternity care. And so requiring it to be in my insurance policy is something that I don’t need and that will make the policy more expensive.” From his perspective, that of an older, male Senator, buffeted by a great salary and irrevocable health insurance, he is correct. He does not need a maternity rider on his policy.

Likewise, as a 40 something woman, I don’t, nor will I ever have, erectile dysfunction or a need for prostate cancer coverage, so why should I pay for those items in my policy? For that matter, why should my tax or insurance dollars, go towards anything that I don’t personally need or want?

I didn’t intend this blog to be a political or economic commentary, but the disconnect between the on-going political folly and reality are strikingly analogous to what many women experience when faced with a chronic, hormone-related condition. So many women among us live for years with pain, are often misdiagnosed repeatedly, sometimes even told,‘this is normal’ or ‘it’s just your hormones’ as if to say, it’s not important enough to merit consideration. Like with Senator Kyl, there is a disconnect between what is needed and what is perceived as needed.

How do we bridge that gap? It’s obvious to any woman who has experienced a chronic hormone or menstrual-related health condition that more research is needed. It is unconscionable that endometriosis, for example, which affects >10% of the female population, takes 5-10 years to diagnose (Arruda et al. 2003; Hsu, Khachikyan & Stratton 2010, Pugsley & Ballard, 2006). It is even more troubling that the first line of treatment is oral contraceptives, as it is for many women’s health conditions. Oral contraceptives are fabulous for birth control, but do they really work for all gynecological conditions? Are the hormonal indices for endometriosis the same as those for PCOS or for PMS? Are we all so similar that one pill will fix everything?

In light of the current discourse on women’s health, which includes such brain twisters as whether pregnancy is a pre-existing condition and men ought to be responsible for contributing to maternity care to ‘do women deserve preventative healthcare’ (thankfully, the IOM says yes) and my favorite, the whole pap smears at Walgreens suggestion, it’s not difficult to see why gaps in women’s health research still exist. It is also clear that the tenor and content of public discourse, and as a consequence, the direction of research and public policy, are important and must be brought back to stuff that matters. For many women, and the men who love them, women’s healthcare and research are important.

Even though I personally will not ever need prostate cancer treatment or research, the men in my life may, and so I don’t begrudge the dollars spent for those endeavors. I think many men feel the same about women’s healthcare and research. Help us bring the conversation back to what matters. Help us prove that hormones are important in women’s health research and care.

Stand up and tell your story.

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Of Stocks and Hormones: Why Your Ovaries Are Like the Dow

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Starting a company is always difficult; starting one during the great recession is just mad. And then to launch the website and blog days following one of the largest stock market downturns in history…well that’s just damned unfortunate. Or is it? Maybe there is no better time to build something than when everything else is failing.

Why talk about the market as an introduction to a website about women’s hormones? In some strange way there are similarities. A negative earnings report from one company or civil unrest halfway around the world can send the entire U.S. market into chaos for reasons that even renowned economists can’t completely explain. Hormones have similar, intricate connections with one another. Even a small change in one hormone can cause widespread disruptions throughout the endocrine system and have major health consequences. And much like market fluctuations, even experts have a hard time explaining exactly what happened.

The market is fluctuating wildly because of underlying structural inequities and a failure to measure and manage the appropriate indices. Women’s health suffers because of inequities in funding and access and the failure to measure and manage the appropriate indices – hormones. While pundits and politicians are eager to assign blame for the latest economic crisis, debates in women’s hormone research often devolve into accusations of ‘fringe science’ and ‘poor methods’. We all see the same problem, but we argue over ideology instead of just doing something about it.

At Lucine, we’re doing something. We’re launching a company devoted entirely to understanding women’s hormone health…in the worst economy since the great depression. Neither the puns nor the obstacles escape us.

So here we are, at the inaugural publication of Hormones MatterTM. We don’t have all the answers. We don’t know if what we’re doing will work. All we know is that it’s time to act. And we need your help.

As a first step, we are changing the conversation. I think, as women, we can all agree; hormones matter. It’s a simple concept, but one not readily accepted in all circles. Once we show that hormones matter, then we can move to the next premise; stuff that matters merits research, measurement and, above all, respect.
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