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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