What was the beginning of your endometriosis journey like before you knew what was happening?
painful and misunderstood and ignored, gaslit
When were you diagnosed, and what was your journey to getting diagnosed like?
going private rather than NHS, it took 30 years
What did it feel like to finally have a name for what you were experiencing?
validation, i was not crazy or just pain to be expected as a woman
How does endometriosis show up in your body and daily life?
pain, swelling bloating, crippling on the floor pain, tiredness, cancelling plans, sometimes my words will not come out right due to the pain
How would you describe the pain or physical challenges of endometriosis?
some days you have to give in and go to bed with heat and pain medications so strong they knock you out, other days you HAVE to get up and do things and that’s a challenge to commit to daily life with such pain
Do you have “good days,” and if so, what do they look like?
yes, they are days i mark i a calendar as they are rare, but to go 24 hours without pain or “too much pain” is wonderful and makes me sad though to know that is what a normal life is like everyday. But i can accojplish a lot on a day without pain
How has endometriosis affected your education, work, routines, or ability to make plans?
yes, i cancel a lot of plans or if i do go out i don’t feel like im having fun as im in pain and not enjoying events or i have to leave early. Taking time off is difficult, so i live on pain medications
Has endometriosis had an impact on your finances or access to care?
access to care in the NHS, yes i was fobbed off a lot but once going private thanks to my husband paying access to care was much better
What has your experience been like with doctors, specialists, and navigating the healthcare system?
for 30 years it was not good, i was told it was normal, it was IBS, lifestyle choices i was just overweight, i was ignored and gave up- until it became so bad, i also had to fight for the right pain medications
What has your experience been with treatments, surgeries, medications, lifestyle changes, or other approaches?
Medications once i got the right ones help though i was made to feel i was begging for narcotics and a drug addict until i got my diagnosis, surgeries help a bit but its not the end of this
What has it been like to live with a condition that often isn’t visible to others?
better since i know what it is and i can advocate and educate people about it. But some people see me curled up in a ball and cant understand the level of pain that is not visible and trying to describe it is sometimes futile
Have there been times when you felt dismissed or not believed about what you were going through?
yes a lot , especially in my teens, a lot of gaslighting about women’s problems were thrown at me over the years and people in my personal life did not believe the pain i was in
What has the emotional or mental side of living with endometriosis been like for you?
the tiredness it creates eventually makes you sad and depre4ssed along with not being believed makes you feel sad too, pain also takes it toll mentally
How has endometriosis affected your relationship with your body, identity, or sense of self over time?
yes i felt at odds with my body for a long time until i knew what was wrong with me, i knew other girls and women were not sidelined day to day by this and could not make sense of why i was different, i was told i was just overweight due to the bloating so i have tried so many diets and felt failure at each step
How has endometriosis affected your family relationships, friendships, or dating life?
luckily no, i have always had an understanding husband and parents when i was a teen in the early stages, they were the only ones who could see and believe me, my husband did research and we tried a lot of things in case it was IBS in case it was fibroids. i had a lot of support
Has endometriosis had an impact on intimacy or your sexual life?
yes, it was painful and past partners before my husband never understood when i had to stay stop, luckily my husband was great and understanding and we had a strong relationship that was reassuring
If relevant to your experience, how has endometriosis influenced your thoughts, decisions, or experiences around fertility and family planning?
none, i have never wanted children
Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?
heat heat heat, hot as you can stand baths, the right pain meds, emotionally talking to people has been great
Do you feel supported in your journey? Who or what has helped you most?
yes by my husband, parents, friends and support groups online, no matter what time you are up in pain there is always someone awake in the world to connect with and talk too
Have you connected with others who have endometriosis, either online or in person? What has that experience been like?
yes, support groups and via my own endo awareness blog, its been a blessing to talk to people who just “know” what you are going through
How has your relationship with endometriosis changed over time?
acceptance and knowing its not my fault, there is something there physically and i can work with it now
More broadly, what are your thoughts on how the medical community understands and prioritizes endometriosis?
it needs more funding at grass roots level, most peoples first contact is a GP, family doctor and they are the ones who need more eduction in this, they need to know if you so present with more than 3-5 symptoms of endo then it should be looked at as such and not ignored or fobbed off
How do you feel endometriosis is represented in society or the media? What would you like to see change?
its getting better in the past few years, but it needs more mainstream media to pick this up, even in medical dramas to put it in a script. I still find a lot of people have heard of it but do not fully know the symptoms and the impact – the impact really needs to be discussed more
What would you like more people to understand about endometriosis?
the impact it has on daily life, how we function and carry on despite debilitating pain
When you think about the future, what fears, concerns, or hopes do you have?
that with more funding there will be more research and hopefully a cure, my fears are governments will not put the right amount of funding and effort into this