When the pain and health concerns of women and people with cycles are still so often normalised or brushed off as imagined, period tracking is becoming an increasingly powerful tool for better, more personalised healthcare support.

Clue, together with the Bill and Melinda Gates Foundation, recently conducted a study looking into how self-tracked data in period tracking apps can support more accurate diagnoses and individualised management of conditions like heavy menstrual bleeding (HMB).

Estimated to impact around 30 per cent of women, HMB has long been difficult to diagnose, often going under-recognised.

This is thanks, at least in part, to the normalisation of pain and problem periods as something you “just have to live with”.

Different people may have vastly different understandings of what constitutes a heavy period – with personal bias and cultural norms coming into play.

Consider, for example, the perception of someone who comes from a family where heavy periods are considered the norm and complaints are considered an overreaction.

Such people may downplay their own experience and not be likely to seek help, or to even acknowledge their period as being heavy, despite having the clinical symptoms.

Where HMB was previously clinically defined as the loss of more than 80mL of blood in one menstrual period diagnostics have recently shifted toward a more holistic understanding of what makes a period “heavy”. And it’s much more than blood loss alone.

Many clinical organisations now define HMB as excessive menstrual blood loss that interferes with a person’s physical, social, emotional, or material quality of life.

This shift in definition was both necessary (anyone measured their menstrual blood loss lately?) and long overdue.

In one study, only 26 per cent of people who described their period as “heavy”, actually had blood loss higher than the 80 mL clinical norm.

Removing standardised clinical criteria for diagnosing conditions like HMB increases the need to more thoroughly understand individual experiences.

As a period tracking app with a large, diverse user base and unprecedented dataset, at Clue, we were interested in how self-tracked data could support more accurate diagnoses and personalised healthcare by informing individual assessments of HMB.

Our study compared the de-identified real-time tracked data of over 6500 consenting Clue users, to their responses to an online questionnaire which asked them about their last period.

We found that for those who reported having a heavy or very heavy period in the questionnaire, actual flow heaviness was not always the most influential factor.

Instead of just days of heavy flow, period “heaviness” was associated with a variety of additional factors including increased app-tracked period length, increased pain and other physical symptoms such as fatigue and digestive issues, as well as greater disruption of daily activities such as the ability to participate in sexual activity, social and leisure activities, school or work.

Notably, almost 20 per cent of respondents who stated that they had heavy or very heavy periods had not tracked any days of heavy flow, but did track period length and quality of life indicators such as pain and disruptions to daily life similar to those who had tracked heavy flow.

This reinforces why a personalised approach is needed for healthcare support, as the characteristics of individual definitions of “heavy menstrual bleeding” – while sharing some similarities – can vary considerably from person to person.

To support those who are experiencing disruptive menstrual periods or other reproductive health challenges, a holistic approach to care is essential.

Apps like Clue can facilitate quick and simple tracking of a variety of cycle-related experiences in real-time, including things like pain, sleep, mood, and energy.

Our study also found that those who experienced long periods were more likely to underestimate their number of bleeding days, even in their most recent periods, underlying another challenge for accurate diagnoses.

By removing the burden of having to accurately recall previous periods or subtle changes over time, one’s tracked period data can become a powerful, detailed health record – and the basis for more confidently self-advocating with your healthcare provider, through having a deeper understanding of your unique patterns and concerns.

User centric, personalised, digital healthcare is the next frontier. We’re just beginning to see what’s possible when self-tracking can help give women and people with cycles the self-knowledge, insight, and data to back up and validate experiences that have otherwise been invisible and hard to communicate and quantify to their healthcare providers.

Amanda Shea is the head of science at the Berlin-based period tracker app Clue.