What was the beginning of your endometriosis journey like before you knew what was happening?
Pain started with first period. It was so heavy too.
When were you diagnosed, and what was your journey to getting diagnosed like?
Multiple ovarian cyst bursts in teens, trying pain medications, finally laparoscopy around 21 to diagnose it.
What did it feel like to finally have a name for what you were experiencing?
Somewhat helpful.
How does endometriosis show up in your body and daily life?
Several operations, told to keep my parts as long as possible, eventually led to cancer, chemotherapy , can’t take hormones, celibacy
How would you describe the pain or physical challenges of endometriosis?
Was a musician, performing and entertaining while clots coming out was so tough
Do you have “good days,” and if so, what do they look like?
No, no pain after surgery but no sex for years. Still have hot flashes
How has endometriosis affected your education, work, routines, or ability to make plans?
Was in pain so much but had nothing to compare it with. Now post cancer 20 years. No more pain fortunately
Has endometriosis had an impact on your finances or access to care?
No
What has your experience been like with doctors, specialists, and navigating the healthcare system?
No useful interventions
What has your experience been with treatments, surgeries, medications, lifestyle changes, or other approaches?
Made it worse I think.
What has it been like to live with a condition that often isn’t visible to others?
People don’t understand or care really.
Have there been times when you felt dismissed or not believed about what you were going through?
For sure.
What has the emotional or mental side of living with endometriosis been like for you?
No sex, sad.
How has endometriosis affected your relationship with your body, identity, or sense of self over time?
Still love myself.
How has endometriosis affected your family relationships, friendships, or dating life?
Yeah, poor husband still loves me.
Has endometriosis had an impact on intimacy or your sexual life?
Yes!
If relevant to your experience, how has endometriosis influenced your thoughts, decisions, or experiences around fertility and family planning?
No kids as a result.
Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?
I am grateful to be alive
Do you feel supported in your journey? Who or what has helped you most?
Not sure.
Have you connected with others who have endometriosis, either online or in person? What has that experience been like?
It helps to share with others.
How has your relationship with endometriosis changed over time?
Yes, after surgery.
More broadly, what are your thoughts on how the medical community understands and prioritizes endometriosis?
It didn’t for me.
How do you feel endometriosis is represented in society or the media? What would you like to see change?
Silent
What would you like more people to understand about endometriosis?
The pain
When you think about the future, what fears, concerns, or hopes do you have?
Probably be alone some day. Don’t see other relationship possible.
Is there anything else you’d like to share?
I think of all of those in the past and present who have died from this.