privacy-in-practice
Endometriosis Data Privacy Checklist
A privacy checklist for endometriosis logs, including pain, sex pain, bowel and bladder symptoms, fertility, surgery, diet, medicine, exports, apps, accounts, and backups.
Endometriosis notes can become very detailed.
One log may include pain, sex pain, bowel symptoms, bladder symptoms, fertility plans, surgery notes, diet, medicine, photos, locations, exports, and messages. Before you put all of it in one place, decide what belongs where.
This checklist is not legal advice. It does not promise safety. No app can make high risk situations safe.
1. Sort your endometriosis data
Start with what you track now.
Data type I track it Sensitivity Where I will keep it Period start dates low / medium / high Pain scores low / medium / high Pain location low / medium / high Sex pain notes low / medium / high Bowel symptoms low / medium / high Bladder symptoms low / medium / high Fertility goals low / medium / high Pregnancy notes low / medium / high Surgery history low / medium / high Medicine and dose notes low / medium / high Diet notes low / medium / high Photos or scans low / medium / high Partner names low / medium / high Clinician export low / medium / high
You can keep the pattern in one place and private details somewhere else.
2. Decide what stays on device
On device storage can reduce server side copies. It does not remove every risk.
Good candidates for on device tracking:
Period dates. Cycle day. Pain score. Pain location. Short symptom labels. Bowel or bladder symptom labels. Medicine timing. Visit questions.
Be more careful with:
Full sex pain notes. Partner names. Fertility or pregnancy plans. Surgery photos or records. Long diary entries. Location details. Screenshots. Full app exports.
Floriva is built for local cycle and symptom notes. Still, you decide what to type, export, screenshot, or share.
3. Use short labels when they are enough
Short notes can still help care.
Instead of storing Store this if it is enough A full sex pain story "Sex pain. Deep. 7/10." A long bowel note "Pain with bowel movement. Period day 2." A full bladder story "Urgent pee. Burning. Asked about UTI." A full fertility diary "Trying to conceive. Ask next steps." A full conflict note "Privacy concern at home."
Do not hide urgent medical details from care. This is about choosing safer storage, not keeping care teams in the dark.
4. Leave out what does not help the task
Before you save or share a note, ask what job it does.
Usually leave out:
Partner names when "partner" is enough. Exact locations unless care needs them. Screenshots of private chats. Photos that do not help care. Old diet notes when diet is not the visit topic. Raw diary entries when a summary is enough. Details another person could use against you.
Keep what helps care:
Dates. Cycle day. Severity. Symptom type. Daily impact. Medicines and dose changes. Surgery or imaging dates. Questions you need answered.
5. Make a clinician summary
A summary may be safer and clearer than a full export.
text Endometriosis tracking summary
Time range:
Period start dates:
Worst symptom days:
Pain location and score:
Bowel or bladder symptoms:
Sex pain or fertility concerns:
Medicines or treatments:
Surgery or imaging history:
Data I did not include:
Questions:
Use the endometriosis symptom checklist or appointment prep checklist to build the summary.
6. Check before you export
Before you export, upload, email, or print endometriosis data, ask:
Who will receive it? Why do they need it? Is a summary enough? Will it become part of my medical record? Does it include sex, fertility, pregnancy, or partner notes? Does it include bowel or bladder details? Does it include diet notes that are not needed? Can I remove private notes first? Will a copy stay in email, cloud storage, or a portal? Can I delete the export later?
If the answer is unclear, pause and ask.
7. Review app and account settings
Check each app you use.
Check Yes, no, or not sure Notes The app works without an account Data stays on device Cloud sync is off or not used Phone backup includes app data Export is optional Deletion covers account data Deletion covers backups Notifications hide private text App lock or phone lock is on Analytics or ad sharing is explained Location is off Contacts access is off
The FTC says consumer health apps may have privacy and breach duties even when HIPAA does not cover them. That does not mean every app is safe. Check the policy, settings, backups, and exports.
For broader choices, read the period tracker data minimization guide.
8. Check backups and shared access
Your safest app setting can be weakened by backups or shared access.
Check:
Phone cloud backup. Shared Apple ID or Google account. Family device sharing. Shared tablet or laptop. Email drafts and sent mail. Cloud folders. Photo backups. Printer history. Old exports. Old app accounts.
If another person can access your phone, account, or cloud backup, treat the notes as shared.
9. Use a two layer plan
This is a simple default.
Layer What goes there App Dates, scores, short symptom labels, visit questions Private file or paper Raw details, names, sex pain detail, safety concerns Clinician summary Pattern, dates, severity, daily impact, care questions
For bowel and bladder symptoms, use the endometriosis bowel and bladder symptom log. For Floriva setup, read Floriva for endometriosis tracking.
10. Know when privacy steps cannot help
Privacy steps can lower some exposure. They cannot fix unsafe homes, coercive relationships, urgent medical symptoms, or legal risk.
If someone is monitoring your phone or pressuring you to share data, use the safest device and support channel you have. If symptoms feel medically unsafe, get care first. You can clean up records later.