The Management of Chronic Gynecologic Conditions During COVID and Beyond - Episode 12
Supported by: AbbVie
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Stacey Missmer, ScD, shares how stigma, normalization and dismissal contribute to diagnostic delays heavy menstrual bleeding from uterine fibroids.
Ayman Al-Hendy, MD, PhD: Stacey, I’m really going to get you started now that you’re warmed up on this because you probably contributed the most important literature in this area. Can you share with us how stigma, normalization, and dismissal; these, to many of us, seem like synonyms, but how these are distinct but somehow interrelated concepts that contribute to diagnostic delay.
Stacey Missmer, ScD: Absolutely. As a reproductive epidemiologist, I focus quite a bit of my work on the impact of endometriosis and particularly endometriosis-associated pain at different points of life course—what are the impacts in quality of life and development in adolescence versus what are the impacts in women in their childbearing years versus what are the impacts as women approach the menopausal transition and post-menopausal years. We rely a lot on our colleagues in the medical sociology realm. For example, Junca Gupta had a really fun read and really interesting study published 2 years ago in BMJ Open, that did focus groups with teens in New York City. They had just over 50 teens, boys, and girls, talking through in focus groups and using vignettes to identify issues around normalization, so normalization being defined as the perception that these symptoms or experiences are normal.
One of the anecdotal jokes, but a joke based in fact, is that many adolescents have bowel issues, and a large proportion have constipation issues. It is not unusual for adolescent medicine and family doctors to ask a patient if they are having regular bowel movements, and the answer is I’m regularly having a bowel movement once a week. What is normal to 1 person, especially for these areas that aren’t talked about, which comes into the stigmatization part, as clinicians, trying to assess heavy uterine bleeding. What is normal uterine bleeding? What is a normal volume? What is a volume or a duration that is not normal?
This is very true also for dysmenorrhea. Dysmenorrhea is the only pain that’s considered normal in any realm. For headaches, there is a spectrum from a run-of-the-mill, not-that-life-impacting headache, to severely debilitating migraine. Even the run-of-the-mill, not-impacting headache isn’t considered to be something that is a normal part of one’s day and experiences, but dysmenorrhea is, menstrual cramping is considered part of the normal spectrum of gynecologic health.
A critical thing around these issues are making sure that we’re understanding both in our families and communities but particularly in the clinician-patient dialogue, and, in particular, in adolescence, that life-impacting symptoms, dysmenorrhea that is preventing girls and women from conducting their lives as they wish; that is not normal. Uterine bleeding that is impacting the ability to, again, go about one’s normal activities is not normal. What happens over time is that it’s something that we really have to consider as we think about improvements in symptoms and as we think about the life course. Women who have been experiencing heavy menstrual bleeding since their teens, often if you now survey them about how life impacting that is when they’re in, say, a decade later. They’ve been experiencing for a decade, and they’re now in their late twenties; the life impact is less. For many women, it’s not necessarily because the heavy menstrual bleeding diminished. It’s that they’ve developed coping mechanisms. There are some excellent patient groups particularly around uterine fibroids, The White Dress Project and things like that, that have a focus on seeing, recognizing, acknowledging, and also incorporating into our clinical understanding of how women alter their lives to function around and to be resilient around some of these symptoms.
Another critical thing in adolescence in particular is that these symptoms can become very isolating, in part because they’re not sure what is normal and what isn’t, so they may be embarrassed to discuss it. That in and of itself is isolating, but also what we’re seeing emerging more and more in data, particularly in qualitative research, is that teens are reporting that they are increasingly comfortable talking with friends and family members, talking to school nurses and to clinicians about what they’re experiencing, and it’s not that they’re being dismissed or ignored, but a teen who is sharing that she is struggling with a cyclic pelvic pain and dysmenorrhea, her friends may hesitate to invite her to as many things because they don’t want her to feel pressure to go or she will have said no to going to the movies, trying out for the sports team, or trying out for the school play because she’s anxious about being able to fulfill those responsibilities or anxious about being away from home and not being able to deal with her pain. The more she declines doing that, the less she gets invited to do those things, so her sphere becomes smaller and smaller.
That’s also what we see a bit in students who have difficulty going to school as regularly as they need to. It is important that teens have, you know, most public school districts and state regulations have dispensations for health reasons to miss school and tutoring and things like that, but what we find is the more students do miss that social interaction, the harder it becomes to reintegrate.
Transcript edited for clarity.
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