It happens every week in my clinic. I ask a patient one simple question and the floodgates open. I hear confessions of days upon days of missed work, school, or social obligations, an inability to leave home for more than an hour or two (pre-pandemic), intense exhaustion, difficulty concentrating, and an overwhelming sense of frustration and powerlessness. It always ends with a near heartbreaking conclusion that years of suffering could potentially have been avoided “if only.” If only she had brought it up with her doctor sooner, if only her doctor had asked, if only the topic at hand was not so deeply entrenched in shame.
So, what is the question that leads to this outpouring of struggle? “Tell me about your periods.”
While we may like to think that we, as medical providers, are comfortable with and cognizant of all aspects of our patients’ health, the data suggest that we might be missing more than we realize when it comes to women’s reproductive health.
Most menstruating individuals with bleeding disorders experience monthly heavy bleeding, often accompanied by the challenges and symptoms described above, yet these patients are often diagnosed late – or not at all.1 We may forget to ask our patients, even those on anticoagulants, about monthly bleeding.2 Few women feel comfortable bringing these issues up and, sadly, many do not even know that what they are experiencing is abnormal or treatable.
What is it about this topic that feels so intimidating? One might argue that the main issue is embarrassment – either ours or our patients’. However, the nearly 1,500 articles on sexuality and cancer indexed in Medline and the nearly three million prescriptions for sildenafil handed out and filled in 2018 suggest that health care professionals are able to address sensitive topics when needed. So, why is it that this important and incredibly common issue so often goes overlooked?
We owe it to our patients, colleagues, and ourselves to consider the lens through which we view our patients and how this might affect our interactions with them and the care we provide. When discussing this particular topic with colleagues, a few may admit to some discomfort or embarrassment around the topic, but most would say they simply don’t think about asking patients about their menses. This apparent forgetfulness arises, I believe, from the fact that our medical minds seem to “default” to the care of non-menstruating individuals. I also believe it will take some serious introspection and intentionality to change this default mindset to a more inclusive one.
Like the “Swiss cheese” model we use to consider the role of systems in medical error, this lack of awareness suggests a bigger issue than individual inattentiveness and reveals some serious “holes” in our systems. Most of us are painfully aware of the inequities in the history of medical research, which was performed almost exclusively in cisgender males. We like to think that we have corrected this imbalance by including more women in studies, as mandated by the National Institutes of Health (NIH) policy enacted in 1986 (an alarmingly recent date). Since 2014, the NIH also has required that preclinical research “consider sex as an important biological variable.”3 Despite these positive changes, it is readily apparent that our current research models, and thus the data upon which we base our treatment decisions, fail to adequately consider and reflect our menstruating patients.
The standard measures of bleeding outcomes used in clinical trials were not designed to capture the significance of monthly bleeding. Thus, studies of antithrombotic agents inevitably and grossly underestimate the significance of increased menstrual bleeding. Even though excessive menstrual bleeding has been shown to affect two-thirds of menstruating individuals who are taking oral anticoagulants and to lead to numerous adverse outcomes (including iron deficiency and anemia, as well as impaired quality of life and concentration), we consistently fail to evaluate for this in a meaningful way, even in our highest-quality studies.
Randomized controlled trials studying the impact of various direct oral anticoagulants on menstrual bleeding have only recently started enrollment, after nearly a decade since the agents came on the market and after years of observational data and post-hoc analyses suggesting important differences in rates of heavy bleeding.
So, how can hematologists ensure our menstruating patients get the care they need and deserve? First, we need to get comfortable with discussions about menstruation and other aspects of reproductive health. The more comfortable we are, the more comfortable our patients will be and the closer we will be to making these discussions part of our routine.
Next, we need to cultivate an increased awareness of the experiences of our menstruating patients. How does their hematologic diagnosis affect their menstrual and reproductive health, and vice versa? As a “nonmalignant” hematologist, I consider this most commonly in the setting of bleeding disorders. However, it is also critical to have discussions about the impact of anticoagulation on menstrual bleeding and the safety of various forms of contraception in women at risk for thrombosis. Similarly, providers in malignant hematology need to consider the additive impact of menstruation on anemia and discuss strategies to reduce or stop menstrual bleeding and preserve fertility, if desired.
Those of us who engage in clinical research need to be mindful not only of enrolling menstruating individuals in our trials, but also of important outcomes that may be specific to this population, such as scores from menstrual bleeding questionnaires or iron studies. Those of us who engage in preclinical research must, as the NIH requires, consider sex as an important biologic variable, perhaps taking it a step further to consider that the role of this variable may differ in the pre- and post-menopausal settings. Those of us who are educators need to encourage trainees to do all these things to ensure these considerations come far more naturally to the next generation of hematologists.
If we, as a medical community, are willing and able to be intentional in our discussions, patient care, and research, I have high hopes that we can “default” to a point of view that is more inclusive of our menstruating patients. Then, perhaps, the “if only” conversations in my clinic will become a thing of the past.
- Weyand AC, James PD. Sexism in the management of bleeding disorders. Res Pract Thromb Haemost. 2020;00:1-4.
- Samuelson Bannow BT, Chi V, Sochacki P, et al. Heavy menstrual bleeding in women on oral anticoagulants. Thromb Res. 2021;197:114-119.
- NIH. Including Women and Minorities in Clinical Research Background. Accessed January 11, 2021, from https://orwh.od.nih.gov/womens-health/clinical-research-trials/nih-inclusion-policies/including-women-and-minorities.
The content of the Editor’s Corner is the opinion of the author and does not represent the official position of the American Society of Hematology unless so stated.