Redefining diabetes for people who menstruate

Before we asked members of our community to share their diabetes device data with us and track #periodstart, #periodend, and #rescuecarbs for 90 days, the Tidepool Period Project started as an exploratory conversation between members of the Tidepool team, people with diabetes who menstruate, and health care providers. Before we could begin tackling something we thought was a problem, we first had to define the scope of the problem and make sure there really was an unmet need to solve.

From those initial conversations emerged six key themes. Maya Friedman and I are here to share them with you.

Clear Clinician Needs:

What are clinicians needing to either encourage or enhance their conversations with patients around menstrual cycles? We know that clinicians already have a documentation burden and don’t have enough time to spend with their patients. Menstruation is a variable that can often go unaddressed and clinicians need tools that make it easier for them to make the most use of their time with their patients.

Data Tracking:

We found a wide range of opinions on period tracking apps, from people who use them faithfully and rely on the information, to people who rightfully point out that there’s already too much to track with diabetes. We heard we cannot add to the already heavy burden of diabetes management.

A Taboo Topic:

There is an opportunity to try to remove the shroud of shame from talking about menstruation. This cycle is normal, and experienced by many people with diabetes. It complicates management and we all collectively feel that there is a need to encourage this conversation.

Caregivers Perspective:

Speaking of not wanting to talk about periods, this can be especially true for teenagers who are still actively involving their parents in their diabetes care. Taking the needs of caregivers into consideration is important.

Managing Insulin Dosing:

Many people we spoke with utilize different techniques to alter their insulin doses depending on the timing of their cycle. Some people use insulin pump features to alter all of their settings during the week of their period, or during ovulation, for example. Others say they have tried, but there are barriers like forgetting to revert the settings back to normal, or forgetting to turn them on in the first place.

A Desire for Education:

Lastly, we heard that some people with diabetes don’t understand how their menstrual cycle is affecting their diabetes management. The thirst for knowledge is present, and having resources that teach not only what the hormones are likely doing, but how they could be having an effect on glucose management are needed.

As we continue to explore the relationship between hormonal fluctuations and diabetes device data, and as the efforts of this project expand and we seek insights and knowledge from a wide range experiences—from women, trans men, and non-binary females—we'd love to hear from you. If you’ve got something to share or something you’d like to see us explore further, please get in touch by sending a message to tpp@tidepool.org.

As a nonprofit organization, we are able to focus on this larger impact on the diabetes community instead of on returns; but we need your help. We invite you to join us along the pathway we’re building to make an interoperable automated insulin dosing system a reality and drive change across all levels of the diabetes industry.

We can Redefine Diabetes together when you support Tidepool with a donation at tidepool.org/donate.