“I wish there were something I could do to help you”
Living with endometriosis, you likely hear “I wish there was something I could do to help you,” from concerned friends and family feeling helpless as they watch you battle against the disease. Often the best they can do is offer emotional support and Epsom salts. Finally, they may be able to help in a new meaningful way: self-tracking on Phendo as a control participant.
Why is it important to include people without endo?
Phendo is a research app that allows women to self-track and manage their endometriosis symptoms. By inputting data about their everyday experiences, users help our researchers gain a clearer picture of what it’s like to live with endo. However, it’s also important that we determine which symptoms are due to the disease and what may be a more “normal” part of a woman’s life. By collecting data from controls (those without endometriosis), we can compare the experiences between controls and women with endometriosis.
Take, for example, Endo Warrior Lizzy who invited her endo-free friend Jess to use the Phendo app. On the first day of her period, Lizzy tracks severe aching in her left pelvic region, heavy bleeding, and nausea. On the first day of Jess’s period, she logs moderate pelvic cramping, a headache, and fatigue. Like all women, the two friends’ experiences are unique. When we collect this information from many women over the course of several menstrual cycles, patterns begin to emerge. This data is vital to helping us understand which symptoms are part of the experience of endometriosis and which are a common among all women. Understanding such differences is essential in the effort towards better diagnostics and treatments.
What can be tracked in Phendo?
In addition to helping researchers, control participants benefit by recognizing their own health patterns. Currently, Phendo supports participants in tracking the large set of symptoms typically experienced by endo patients, as well as tracking personalized foods of interest (e.g., foods that improve or worsen symptoms), medications, hormones, supplements, and exercises. For control participants, using Phendo means tracking and managing their daily life experiences. The Citizen Endo team is hard at work building functionality so the app will help in identifying pain triggers, and determining what helps and what worsens symptoms for an individual. It also will organize and present their data in a way that easily allows discussion of symptoms with doctors. But in the meantime, by simply tracking their cycles for 90 days, control participants can shed an enormous amount of light on both the mysteries of endometriosis and the workings of their own body.
What should I tell my friends who want to help?
Data from controls plays a critical role in the effort to improve women’s reproductive health. If you know women that want to join the cause, invite them to download Phendo, available in the App Store, and to follow us on Twitter and Facebook.
About Citizen Endo
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Phendo follows research standards for protection of participants. Our research is reviewed and approved by the Columbia University Institutional Review Board (IRB).