What was the beginning of your endometriosis journey like before you knew what was happening?
I didn’t have periods like everyone else, sat in an exam at 16 and all of a sudden I was flooding, in extreme pain, I sat till end of exam and ran home with heavily blood stained trousers with a jumper tied around my waist to try and hide as the trousers were cream
When were you diagnosed, and what was your journey to getting diagnosed like?
2024 a laparoscopy diagnosed after I had been told it was just periods and put on contraception at 17 to ease the bleeding and pain, the diagnosis took 26 years, in that time I watched my weight increase, the periods heavier and the pain worse, tge bloat that made me look pregnant always,although managing to have 2 children, i didn’t successfully carry all, it took 6 months of heavy bleeding, bloated, feeling full all the time for a gp to order a CA125 blood test, when that came back high markers a ultra sound was ordered, they found mass and things growing, the very same day i was put on the cancer pathway, and referred to the hospital, 4 weeks later I was in hospital scheduled to have a ooophectomy and hysterectomy by laparoscopy however it was abandoned when they discovered it was stage 4 endometriosis i had several years prior been diagnosed wuth adenomysois, i was referred to see a endometriosis specialist however thats where it still continues
What did it feel like to finally have a name for what you were experiencing?
It broke me because 26 years of saying there is something wrong to be told its normal and you just need to go on the pill, it was a relief but also made me very angry that it took so long to be heard
How does endometriosis show up in your body and daily life?
By changes to my bowel, bladder size of stomach, breathing,nerve compression and mobility
How would you describe the pain or physical challenges of endometriosis?
Like someone scraping your insides, very similar to a smear but on a larger scale, my bowel feels like its being twisted, bending down due to the frozen pelvis and my uterus, bowel and bladder fused causes burning, paralysis and severe pain that makes me feel faint
Do you have “good days,” and if so, what do they look like?
I haven’t had a good day now in over 6 months
How has endometriosis affected your education, work, routines, or ability to make plans?
Ive had to reduce my hours little by little to recently 20 which has caused massive financial hardship, this week I was signed off work because my job is active and working against me, i cancel plans regularly due to fatigue, I cant stand for long periods of time nor can I sit, there is no happy meduim
Has endometriosis had an impact on your finances or access to care?
Finances due to change in income i have found myself in financial hardship, struggling to make ends meet
What has your experience been like with doctors, specialists, and navigating the healthcare system?
Its a very split, i have been fortunate to have a gp that initially listened, a gynecologist who has gone above and beyond but thats all, ive not had the best experience with the specialist who just pulled me about my weight
What has your experience been with treatments, surgeries, medications, lifestyle changes, or other approaches?
Deceptyl caused me a significant amount of weight gain causing osteo porosis, surgeries have been abandoned or cancelled most recent due to bmi that is increasing due to my mobility
What has it been like to live with a condition that often isn’t visible to others?
Its been traumatic often judged as its not always visable
Have there been times when you felt dismissed or not believed about what you were going through?
Unfortunately for many years, not just by medical professionals but by work and also friends and family
What has the emotional or mental side of living with endometriosis been like for you?
Its effected my mental health so much, i do feel more depressed and it has caused me to question life’s worth
How has endometriosis affected your relationship with your body, identity, or sense of self over time?
Im very embarrassed by my body, I dont recognise myself, i feel ive aged 20 years in last year
How has endometriosis affected your family relationships, friendships, or dating life?
Confidence is low so relationships and dating is overwhelming, I think the hardest thing is watching my grown boys understand how I feel and why I act the way I do
Has endometriosis had an impact on intimacy or your sexual life?
Yes very much
Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?
Nothing
Do you feel supported in your journey? Who or what has helped you most?
My gynecologist as been the most supportive, but work i feel like I’ve been let down in a big way
Have you connected with others who have endometriosis, either online or in person? What has that experience been like?
Support groups, and other colleagues with endo, its nice to be able to talk about our experiences and to not feel so alone
How has your relationship with endometriosis changed over time?
Its progressively getting worse the symptoms have left me unable to do so much in life
More broadly, what are your thoughts on how the medical community understands and prioritizes endometriosis?
Not enough understanding and treatment available
How do you feel endometriosis is represented in society or the media? What would you like to see change?
More so recently its been in the media, with more people talking about their experiences which is really help to raise awareness
What would you like more people to understand about endometriosis?
How debilitating it is
When you think about the future, what fears, concerns, or hopes do you have?
I would like to see a cure or treatment that allows us to have minimal symptoms but also to be recognised as a disability as that’s what and I am sure thousands of others have experienced ive gone from being independent to dependant on others loss ny self worth.