What was the beginning of your endometriosis journey like before you knew what was happening?
Horrendous painful excruciating pain where I passed out missed time off school work I was rushed to A and E they asked me if I was pregnant I was 13 yrs old
When were you diagnosed, and what was your journey to getting diagnosed like?
10 years I waited to be diagnosed a long one, Had loads of time off school always felt guilty.
What did it feel like to finally have a name for what you were experiencing?
Relief I felt believed
How does endometriosis show up in your body and daily life?
It shows in my face looked gaunt and hollow looking I looked 6 months pregnant
How would you describe the pain or physical challenges of endometriosis?
The pain was horrendous like a twisting knife cutting into you it took my breath away unbearable I used to pass out on the bathroom floor I lived on my own it’s a very dangerous disease if you live alone you really need a call alarm
Do you have “good days,” and if so, what do they look like?
A good day I’m hype my moods were up and down all over the place.
How has endometriosis affected your education, work, routines, or ability to make plans?
I missed loads of time of school so severely affected my education I was never believed in work one employer wouldn’t give me a contract because they thought I was unreliable. Any routines were severely disrupted I couldn’t make plans and if I did I sometimes couldn’t go then so impacted my mental health
Has endometriosis had an impact on your finances or access to care?
Yes I once went to citizens advice for help they said it’s sporadic so couldn’t help me I couldn’t get IVF as I was in the wrong postcode area.
What has your experience been like with doctors, specialists, and navigating the healthcare system?
My mum was a nurse and took me to docs where I was referred to an endo specialist it should have been a 5 and a half hour op but it was just one and a half hours as there was a list of people for surgery.ii couldn’t have it all removed as people were waiting my endo wasn’t removed from the bowel as it had to be a bowel specialist so it was never removed from my bowel sadly the pill was wrong for me as it feeds endo
What has it been like to live with a condition that often isn’t visible to others?
Terrible never believed guilt shame calked a hypocondriac
Have there been times when you felt dismissed or not believed about what you were going through?
All the time friends even family
What has the emotional or mental side of living with endometriosis been like for you?
Horrendous really affected my moods rollercoaster depression where I woukd stay in bed for days black cloud
How has endometriosis affected your relationship with your body, identity, or sense of self over time?
Greatly
How has endometriosis affected your family relationships, friendships, or dating life?
My family were very supportive friends were let down by me and never really believed 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?
Dark thoughts wrong decisions a hot water bottle meditation I’m a holistic beauty therapist by trade but I work in the nhs looking after very unwell patients acutely unwell
Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?
Helping other people a hot water bottle helps pain and my meds but I couldn’t take heavy medication when I was working just hot water bottle paracetamol and Ibuprofen good family being supportive
Do you feel supported in your journey? Who or what has helped you most?
Family and an ex boyfriend
Have you connected with others who have endometriosis, either online or in person? What has that experience been like?
No at the time there was no one
How has your relationship with endometriosis changed over time?
Terrible when I was young right up to 50 I’m 61 now there is more help and I’m post menopausal still having trouble swollen abdomen it’s awful can’t take hrt as it makes endo grow back
More broadly, what are your thoughts on how the medical community understands and prioritizes endometriosis?
It’s getting better. It’s a disease auto immune it’s devastating impact on someone’s life is horrific I woukd bleed so heavy ruining bed sheets it looked like a blood bath people should .
How do you feel endometriosis is represented in society or the media? What would you like to see change?
It’s a disease of the body auto immune disease
What would you like more people to understand about endometriosis?
It’s a debilitating disease passed from mother to baby in the womb
When you think about the future, what fears, concerns, or hopes do you have?
It’s the sister to cancer I feel post menopausal women should have regular check ups I have asked my G P to send me to a specialist in bowel endometriosis she said yes
Is there anything else you’d like to share?
I passed out once on Holliday from the pain I was training as I had been picked to run for Wales I was a runner and I was on a beach in Grease this guy picked me up and took me back to my apartment the kindness of strangers!