What was the beginning of your endometriosis journey like before you knew what was happening?
Complicated. I felt ignored or like it was all in my brain
When were you diagnosed, and what was your journey to getting diagnosed like?
I was officially diagnosed this year but it was mentioned I had it in 2024
What did it feel like to finally have a name for what you were experiencing?
Confirming that I was not crazy !
How does endometriosis show up in your body and daily life?
Painful . By not been able to simply bend in a morning at all. Fatigue all day
How would you describe the pain or physical challenges of endometriosis?
I’m physically exhausted daily. I cant be me. I constantly wonder when the next flare up will hit me. Its a very anxiety loaded diagnosis
Do you have “good days,” and if so, what do they look like?
Yes. I can get up and do what I would do if I didnt have the disease
How has endometriosis affected your education, work, routines, or ability to make plans?
It has affected work big time. I have to explain to employers and I lost my job because of it in a different role.
Has endometriosis had an impact on your finances or access to care?
Yes I have lost wages from time off sick due to it
What has your experience been like with doctors, specialists, and navigating the healthcare system?
Slow and long winded. Which is really frustrating !!!
What has your experience been with treatments, surgeries, medications, lifestyle changes, or other approaches?
I had the coil at first and could only have it in for 6 days due to the pain. The pill is fine but I put on weight which is no good as I need surgery. Weight loss is too slow !
What has it been like to live with a condition that often isn’t visible to others?
Frustrating. Paranoid constantly as I think people think im lying
Have there been times when you felt dismissed or not believed about what you were going through?
Yes all the time by GPS
What has the emotional or mental side of living with endometriosis been like for you?
Its been a roller coaster. One second up and the next down with a flare up. Its constantly depressing
How has endometriosis affected your relationship with your body, identity, or sense of self over time?
I hate my body and self. I feel like im letting people down constantly
How has endometriosis affected your family relationships, friendships, or dating life?
It hasn’t done 🙂
Has endometriosis had an impact on intimacy or your sexual life?
Yes ! When sore it has to be back benched. All the time ! It means its rare that we can !
If relevant to your experience, how has endometriosis influenced your thoughts, decisions, or experiences around fertility and family planning?
It hasn’t for me
Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?
Physically, cutting out diary and gluten. Emotionally talking about it with my partner has helped
Do you feel supported in your journey? Who or what has helped you most?
Yes my wife and mum have supported me endlessly
Have you connected with others who have endometriosis, either online or in person? What has that experience been like?
Yes on Facebook. Its really helped as we can share our situations and advise each other
How has your relationship with endometriosis changed over time?
Iv fallen out with it more over time as it gets worse
More broadly, what are your thoughts on how the medical community understands and prioritizes endometriosis?
It doesn’t. More needs to be done. Including support for people who have been left to lose weight before they even get the help
How do you feel endometriosis is represented in society or the media? What would you like to see change?
I dont think it has enough shout out. It makes us look weak
What would you like more people to understand about endometriosis?
It cannot be seen
When you think about the future, what fears, concerns, or hopes do you have?
Is it going to shorten my life if I dont get sorted
Is there anything else you’d like to share?
Nothing at the moment