Attending the Conference of the Society for Menstrual Cycle Research

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Earlier this month, our team at Citizen Endo traveled to Colorado Springs to attend the 23rd Biennial Conference of the Society for Menstrual Cycle Research (SMCR)! The conference consisted of keynote presentations, panels, plenaries, and several concurrent sessions and workshops. A graphic recorder and facilitator, ConverSketch, attended the conference, providing a great way visualize the discussions. Below is a brief summarization of several talks and sessions at the conference, including some of the graphic recordings!

  • The technological fix is a simple solution designed to solve a complex problem, often inadvertently causing more problems. Menstrual literacy, rather than product distribution, is the best shot at fixing body shame and unequal access.
  • Promote more than access. Demand better, safer, and greener products, stricter government regulation, ingredient transparency and testing, expose environmental implications, and innovate to meet diverse menstruator needs
  • Menstrual hygiene initiatives help girls pass as non-menstruators so they can avoid judgement. This does not challenge menstrual taboos, but promotes menstrual invisibility
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Moderated by Inga Winkler. Panel included Lauren Houghton, Caitlin Gruer, Vanessa Paranjothy, and Phendo creator, Noémie Elhadad

  • No explicit contract between menstrual app developers and their users, such as political agenda, privacy, and lack of explanation in the confidence of predictions
  • Have to think about presenting data to non-data people. Use language that everyone can understand and will be useful
  • Researchers must consider context. Using self-tracking for a patient’s experience supports personal narrative. Using mixed methods approaches to understand biomarkers and cultural markers
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Presentations by Rajasi Kulkarni Diwakar, Decker Dunlop, Rachel Fikslin, and Klara Rydström

  • Needs of different menstruators must be considered (i.e women in jail, women in sex work, women with disabilities, LGBTQ people)
  • Not everyone who menstruates is a woman. Language about bodies and menstruation must consider diverse experiences
  • De-gendering menstruation may help combat stigma and shame associated with menstruation, especially for different menstruators

Presentation “ A PERIODical Review of Menstrual Health Education in Australia” by Dr. Mike Armour

  • Almost a third surveyed said they would not speak to their doctor about painful intercourse and half wouldn’t about pelvic pain outside their period
  • Top three sources women use to determine if their period is normal: Google (50%), Mom (36%), and Doctor (30%)
  • What women surveyed remember learning about menstruation from the PDHPE (Physical Development, Health, and Physical Education) curriculum: biology, nothing useful, normalization, basics, and coping. Only 20% remember learning about pain and menstruation

Presentation “The Wandering Womb: Lasting Implications of Hysteria on Endometriosis” by Heather Guidone

  • Emphasized that it is endometrial-like cells and often a sustained body-wide response. Discussed the current research gaps and that early and correct intervention is vital to endometriosis treatment
  • Endometriosis remains intrinsically tied to psychological profiling, disturbances, and distress. Hysteria was believed to be caused by a wondering womb. Now, instead of hysteria, we see problematic labels such as catastrophizing and somatic disorder.

Moderated by Amanda Laird. Panel included Amanda Cormier, Holly Grigg-Spall, Nicole Jardim, and Ann Mullen

  • Potential harm depending on data sharing practices of the app. Who is benefiting? Could be advertisers, insurance and pharmaceutical companies, government, clinicians, and/or researchers
  • Lack of menstrual literacy leads to the creation of deceptive tech solutions for menstrual problems that don’t exist. Be skeptical, just because it’s a new innovation doesn’t mean it’s medically relevant or a good product
  • Tracking allows the user to become more aware of themselves. Additionally, having a physical record to bring to your physician is vital for patient self-advocacy
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This summarization only covers part of the conference, as there was too much to put into one post! Other topics included menopause, menstrual taboos, hormone replacement therapy, and more. If you are interested in reading the conference and abstract programs visit http://www.menstruationresearch.org/conferences/#conference_2019.

To read our live-tweets from the conference (June 6–8, 2019), go to our twitter page here. Other twitter accounts that live-tweeted throughout the conference are here and here.

To contribute to endometriosis research, you can download the Phendo app and track your symptoms. Tracking in Phendo may also help you understand your experience of the disease and communicate with your doctor.

Download Phendo for iOS here.

Download Phendo for Android here.

For more information about our research and Phendo visit www.citizenendo.org/phendo.

Have any questions? Email us at citizenendo@columbia.edu

Patients and data science for an endometriosis cure: We bridge the gap between patient experience and clinical characterization of endometriosis.

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