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Stories are organized by topic (alphabetically), so you’ll read through all stories in one topic before moving to the next.

I hate hospitals now due to it all

What was the beginning of your endometriosis journey like before you knew what was happening?

Periods all time severe pain

When were you diagnosed, and what was your journey to getting diagnosed like?

Age 14

What did it feel like to finally have a name for what you were experiencing?

Strange, confused

How does endometriosis show up in your body and daily life?

Im on alot of meds

How would you describe the pain or physical challenges of endometriosis?

Very hard

Do you have “good days,” and if so, what do they look like?

I can get a hour or 2 if that

How has endometriosis affected your education, work, routines, or ability to make plans?

Alot

Has endometriosis had an impact on your finances or access to care?

Yes

What has your experience been like with doctors, specialists, and navigating the healthcare system?

My gynecologist is the best but its that nad I got go bk to a different hospital

What has your experience been with treatments, surgeries, medications, lifestyle changes, or other approaches?

Horrible i hate hospitals now due to it all

What has it been like to live with a condition that often isn’t visible to others?

Hard. Difficult, ppl think we are liein

Have there been times when you felt dismissed or not believed about what you were going through?

Yes

What has the emotional or mental side of living with endometriosis been like for you?

Its set my bipolar off badly

How has endometriosis affected your relationship with your body, identity, or sense of self over time?

Yes feel ugly cant look in mirrors

How has endometriosis affected your family relationships, friendships, or dating life?

Alot

Has endometriosis had an impact on intimacy or your sexual life?

Alotno

If relevant to your experience, how has endometriosis influenced your thoughts, decisions, or experiences around fertility and family planning?

No

Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?

No

Do you feel supported in your journey? Who or what has helped you most?

My gynecologist

Have you connected with others who have endometriosis, either online or in person? What has that experience been like?

Yes

How has your relationship with endometriosis changed over time?

Alot

More broadly, what are your thoughts on how the medical community understands and prioritizes endometriosis?

Wish there was a cure im awaiting my 17th op now

How do you feel endometriosis is represented in society or the media? What would you like to see change?

Need more understanding an more tests to get cure

What would you like more people to understand about endometriosis?

The impact it has on our lives

When you think about the future, what fears, concerns, or hopes do you have?

Its keeps coming bk

Is there anything else you’d like to share?

No

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