What was the beginning of your endometriosis journey like before you knew what was happening?
My journey started with periods at 13 years old. They came fast, heavy, painful and exhausting, my parents thought I was lazy and school avoidant but really my body was failing me 2 weeks of the month.
When were you diagnosed, and what was your journey to getting diagnosed like?
I was diagnosed in 2025 without laparoscopy after years of time in and out of hospital. My diagnosis came after they found endometriosis tissue on my kidney and spine. I’m due to have my first surgery in a few weeks to separate my bowel and bladder and remove all visible endometriosis. I spent year begging for help. I developed weekly utis due to endo, and bowel prolapses caused by my bowel being pulled tight every cycle I had. I’m lucky to have had my children young because doctors have told me I have no chance of conceiving now due to how severe it is.
What did it feel like to finally have a name for what you were experiencing?
I knew for a long time it was endometriosis but no one ever took me serious, I have given hormonal contraception, every single one I have tried. I was placed on so many medications for ibs, hormone medication, pain killers, beta blockers… all trial and error to give me relief. None did.
How does endometriosis show up in your body and daily life?
Some days it’s just heavy bleeding and swelling, other days (my more normal life now) I can’t physically walk, my right leg has partial paralysis cause by the endo on my spine, I’m sick, shaking, and over all in the worst pain I have ever experienced.
How would you describe the pain or physical challenges of endometriosis?
I would rather give birth every day than go through my endo flare ups. They ruin my life. I walk with a permanent limp, look 8 months 2/3 weeks a month. 🙁
Do you have “good days,” and if so, what do they look like?
Good days can be amazing, spending time caring for my family, dog walks a day at the beach… but usually by bed time I’m in the fetal position, taking strong opioids, sick basin and heat packs strapped to my stomach and back. It’s not a nice life.
How has endometriosis affected your education, work, routines, or ability to make plans?
I haven’t been able to work for several years now due to the pain and being unreliable. But daily responsibilities like the school runs often fall to my husband or family to step in when I can’t.
Has endometriosis had an impact on your finances or access to care?
It’s expensive, constant sanitary items, pain reliefs, heat packs. And fuel…. Doctors appointments, hospital appointments, buses when I’m physically unable to drive.
What has your experience been like with doctors, specialists, and navigating the healthcare system?
Until last year it was extremely poor. Doctors just guessing, being lied too and not believed. But last year I threatened to go private and raise a lawsuit against my practice, very quickly I met a new gynaecologist who has been absolutely incredible. They believed me, ordered every scan needed, booked my surgery and made a plan to tackle the long list of issues I have and areas of my body covered in this
Disease.
What has your experience been with treatments, surgeries, medications, lifestyle changes, or other approaches?
I rely on strong opioids daily and I’m waiting for surgery. I have found recently mounjaro weight loss medications and controlled my flare ups and made life a little bit easier.
What has it been like to live with a condition that often isn’t visible to others?
Horrible. Having to justify myself all the time.
Have there been times when you felt dismissed or not believed about what you were going through?
For several years
What has the emotional or mental side of living with endometriosis been like for you?
Exhausting. I have a wonderful life and a Broken body.
How has endometriosis affected your relationship with your body, identity, or sense of self over time?
I hate it. I don’t recognise myself most of the time
How has endometriosis affected your family relationships, friendships, or dating life?
It’s being difficult, I have been with my husband since I was 16 but in the last 3 years he’s become my carer and my only constant support, he has had to take over my mother role in more ways than I would ever like.
Has endometriosis had an impact on intimacy or your sexual life?
Yes. I now develop severe bleeding and pain during intercourse. This started about a year ago making life and my marriage very difficult.
If relevant to your experience, how has endometriosis influenced your thoughts, decisions, or experiences around fertility and family planning?
I was lucky to have all my children before it took over. But devestated that my choices have been taken from me to continue our family.
Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?
Mounjaro has been my only small relief in years of trying to get help.
Do you feel supported in your journey? Who or what has helped you most?
My husband and family, oh and my new gynaecologist.
Have you connected with others who have endometriosis, either online or in person? What has that experience been like?
I have one school mum friend on a similar journey who’s had 7 surgeries in 3 years, we talk often.
How has your relationship with endometriosis changed over time?
Progressively worse.
More broadly, what are your thoughts on how the medical community understands and prioritizes endometriosis?
It’s disgusting. I think it needs more funding and education to male doctors!
How do you feel endometriosis is represented in society or the media? What would you like to see change?
I think it needs so much more publicity and studies.
What would you like more people to understand about endometriosis?
How debilitating it is and the exhaustion and pain. I think benifits should be easier accessed without have to embarrass and disclose such private details
When you think about the future, what fears, concerns, or hopes do you have?
Will I ever live pain free…?