What was the beginning of your endometriosis journey like before you knew what was happening?
Confusing. Kept getting told it was all different things.
When were you diagnosed, and what was your journey to getting diagnosed like?
37 long winded
What did it feel like to finally have a name for what you were experiencing?
Relieved and scared as theirs not cure
How does endometriosis show up in your body and daily life?
Every day – it’s not just a period disease I have symptoms everyday and it gets worse around my cycle
How would you describe the pain or physical challenges of endometriosis?
Debilitating
Do you have “good days,” and if so, what do they look like?
On the good days I feel suspicious because I know they won’t last long.
How has endometriosis affected your education, work, routines, or ability to make plans?
Had a big effect on my life had to quit some sports and I go to work not well all the time
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?
The specialists once I was diagnosed that’s it really. I’m just left to crack on. If I need to see gyne again it’s back to the wait list so that’s scary
What has your experience been with treatments, surgeries, medications, lifestyle changes, or other approaches?
Surgery helped a lot, and the pill but in a lot of pain most days.
What has it been like to live with a condition that often isn’t visible to others?
I feel extremely low and the Desogestral makes me feel flat , no one gets it really if they don’t have the condition
Have there been times when you felt dismissed or not believed about what you were going through?
Yes constantly. I had 5 endometrioma cysts one burst and they said I was constipated as if be in more pain (when I went to A&E) so they didn’t scan me I went home. Then had to go back to A&E they done a scan and showed cysts and high cancer marker. Had surgery and they said one burst and I must have been in a lot of pain. Which I was.
Dismissed alot
What has the emotional or mental side of living with endometriosis been like for you?
Anxiety constantly scared to do anything or go on holiday incase something t bad happens. Ruined my relationships
How has endometriosis affected your relationship with your body, identity, or sense of self over time?
I don’t feel like me anymore
How has endometriosis affected your family relationships, friendships, or dating life?
Broke up with my partner my condition was definitely a major part. I’ve decided to stay single because sex is too painful
Has endometriosis had an impact on intimacy or your sexual life?
Yes sex is painful and then in pain for days after
If relevant to your experience, how has endometriosis influenced your thoughts, decisions, or experiences around fertility and family planning?
I’ve decided not to because my fallopian tube is damaged and it could be dangerous plus I can’t see anyone wanting to be with me with my confusion as I’m stage 4
Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?
Caring for my dog
Do you feel supported in your journey? Who or what has helped you most?
No not really. I feel alone all the time. My own research has helped me the most
Have you connected with others who have endometriosis, either online or in person? What has that experience been like?
No
How has your relationship with endometriosis changed over time?
Yeh I’m in a battle with my brain as I don’t want to have it.
More broadly, what are your thoughts on how the medical community understands and prioritizes endometriosis?
Awful. Honestly devostated when I found out I had this because there’s no solution.
How do you feel endometriosis is represented in society or the media? What would you like to see change?
More support and understanding
What would you like more people to understand about endometriosis?
People need to see the damage it does it’s not just a period disease it’s grown into my bladder, super glued everything together, my bowel doesn’t work properly. Damaged my tubes and give me nerve damage in my womb
When you think about the future, what fears, concerns, or hopes do you have?
No hopes just worry
Is there anything else you’d like to share?
Just wish people with endometriosis got more help and treatments