New Study: Self-Tracking Your Endometriosis

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An article published in the December 2016 issue of the Journal of Participatory Medicine focused on women with Endometriosis tracking their symptoms, diet, etc.  In this day and age, there are several smartphone applications that can help you do this. Or…find your own system.

I myself use Google Slides to track my daily food & drink intake (and bowel movements), as well as any pain or symptoms I experience, and sexual activity and pain.  I’m a visual kind of person, so I also have an image that I draw little red squares where I have pain…These slideshows may come in handy at future doctor’s appointments – not to mention help me understand what may (or may not) exacerbate my symptoms.  It’s also how I learned that strawberries (mmmm delicious strawberries) really, really, REALLY wreak havoc on my bowels…ohmigawd.

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Screenshot of 10/18/16 symptom journal
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And from last week – since recovering from surgery, I have *mostly* pain-free days

Anyway – back to the study!  I’m not the only one who enjoys doing this!  Twenty-seven women in New York participated in a study wherein they tracked their pain; menstruation; diet, exercise, and weight; GI issues; fatigue, sleep, or sickness; life events; mood and emotions; comorbitities (other illnesses); and treatments.  These women also attended weekly focus group meetings at the Endometriosis Foundation of America.   It empowered these women to participate in a research study, better communicate with their providers by documenting their symptoms, and manage their symptoms by better understanding their triggers.

Like I said earlier, I enjoy Google Slides (it’s easy, accessible on all my platforms, and I can keep it organized per month).  The women in the study also learned what they liked best: some used good ol’ fashioned pen and paper, others typed notes, others used Excel spreadsheets, others used Google Docs or Google Sheets, and yet others used their electronic calendars.  Many of these women (myself included) used a smartphone application specifically for monitoring their periods.  And now there are smartphone apps specifically designed for tracking Endometriosis.

If you’d like, there are several Endometriosis tracking smartphone applications available to either Apple or Android devices.  I’m not going to recommend any here because I want you to find the best one that suits your needs.

Self-tracking can very well give you a sense of control and empowerment over Endometriosis.  If you track your symptoms, food, pain, etc., I’d love to hear from you in the comments below.  What do you use?  Any tips or tricks for our readers?  How has it helped/hindered you in any way?

Resources:

Journal of Participatory Medicine – (Article; Dec. 2016) Exploring Self-Tracking as a Participatory Research Activity Among Women with Endometriosis

 

~ Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 😉 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa

5 thoughts on “New Study: Self-Tracking Your Endometriosis

    1. Thank you on the diet! I’ve been trying really hard to cut out a lot of the things and still enjoy what I’m eating 🙂 8fit is an app that’s helping me do just that! I can tell it what I can’t eat and it gives me recipes (and exercises) to be healthy 🙂 Not free, though.

      Citizen Endo is the newest one I’ve heard of. Right now they only have the app for the iPhone, so I can’t try it.

      Flutter is another, but I’ve not tried it. Appears to be more of a period symptom tracker, but claims to be an Endo tracker, too.

      Endometriosis Diary appears to be a good one, offering a notes section for recognized triggers, too.

      And there’s the ESHRE app, but it’s only available free to ESHRE members (European Society of Human Reproduction and Embryology).

      Liked by 1 person

  1. My charting began when I was preparing to try to conceive, so I used the Fertility Friend tracker. Excellent resource for those with irregular periods trying to get pregnant, by the way, especially if you purchase a paid account. It’s also very customizable, though you can’t use nifty diagrams the way you do, Lisa. (Very cool, by the way! I never thought to do that.)

    Now I use the Clue app, which is also very cool. Also customizable. I can’t say that I have fully explored its features; I discovered it while pregnant, and haven’t really resumed menstruation since giving birth. But I have played around with it a bit, and it offers far more built-in symptom trackers than FF.

    I think that any system that is customizable and simple enough that you will use it is a helpful tool for the endo sufferer. I like Clue’s big graphical interface, but I’ve always got my phone in my hand. If I were doing my tracking on my computer, Google docs would probably be my go-to.

    Liked by 1 person

      1. The first one (roughly 17 months postpartum) was very…Dexter. Next I had two minipad periods, and then nothing. (I’m on cycle day 112.) So I think “awesome” is the word I’m looking for here. My periods are awesome. And I am in NO hurry to stop breastfeeding. 😀

        Liked by 1 person

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