What was the beginning of your endometriosis journey like before you knew what was happening?
It was like second guessing myself, like my body was lying to me because I was being told nothing was wrong and I shouldn’t be feeling pain. Like I betrayed myself and now I’m living with guilt because I second guessed myself. Like I was going crazy.
When were you diagnosed, and what was your journey to getting diagnosed like?
I was 21 years old when I was diagnosed, and I was 23 when I was diagnosed properly and given a stage. I was in and out of hospital since the age of 13. 13 was the age for my first Pap smear, first internal ultrasound, first time i felt violated. I kept getting told it there was nothing wrong and they only saw free fluid, that it was my mental health and all I needed to do was see a psychologist, then all I needed was to see a physiotherapist. I was told I was drug seeking, and attention seeking. All this time my dad thought I was just trying to get out of school, and I was being dramatic. My mum was my only and biggest support. I have lost a lot of faith in the healthcare system.
What did it feel like to finally have a name for what you were experiencing?
I cried and repeated to myself that I wasn’t crazy, and that I did have something wrong with me. I also apologised to myself.
How does endometriosis show up in your body and daily life?
Pain, fatigue, nausea, migraines, bladder issues, bowel issues.
How would you describe the pain or physical challenges of endometriosis?
Stabbing, burning, and aching. It gets in the way of my sex life, work life, personal life. I’m usually sleeping or bed bound.
Do you have “good days,” and if so, what do they look like?
I wouldn’t say good days. I have easier days than some. I can tolerate the pain, I have a little more energy.
How has endometriosis affected your education, work, routines, or ability to make plans?
I cancel plans, I call in sick to work, I don’t want to go out Incase I have a flare up and need to go home. I hate looking weak.
Has endometriosis had an impact on your finances or access to care?
Yes. Taking time off work and needing to pay for specialist appointments and lots of doctors appointments.
What has your experience been like with doctors, specialists, and navigating the healthcare system?
I have found very rare doctors that listen and understand me. A lot have told me there is nothing they can do.
What has your experience been with treatments, surgeries, medications, lifestyle changes, or other approaches?
Surgeries help, but only for a couple years. I go on hormone tablets and that seems to push out the years for surgery.
What has it been like to live with a condition that often isn’t visible to others?
Hard. I feel like people stare at me and think there is nothing wrong. I have often been told there is no reason for me to take off work and that I take a lot of sick days. I don’t feel seen, or understood.
Have there been times when you felt dismissed or not believed about what you were going through?
Absolutely
What has the emotional or mental side of living with endometriosis been like for you?
Traumatic, it’s made my anxiety and mental health worse.
How has endometriosis affected your relationship with your body, identity, or sense of self over time?
I get mad at myself because I’m usually active and it stops me from doing things I was to and need to do. It makes me hate myself for having a chronic illness and not being normal.
How has endometriosis affected your family relationships, friendships, or dating life?
It’s only affected mine and my dad’s relationship in the earlier stages. But we are fine now. Friends just stopped inviting me anywhere.
Has endometriosis had an impact on intimacy or your sexual life?
Absolutely
If relevant to your experience, how has endometriosis influenced your thoughts, decisions, or experiences around fertility and family planning?
It’s made me realise I need to have kids soon if I want them.
Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?
Weighted blankets for the anxiety, heat packs, or a hot shower
Do you feel supported in your journey? Who or what has helped you most?
My mum, and my partner.
Have you connected with others who have endometriosis, either online or in person? What has that experience been like?
Not really. But I am apart of a support group on Facebook and it’s nice to see other people going through what you go through. I don’t feel so alone.
How has your relationship with endometriosis changed over time?
I’m understanding it a bit more and knowing signs when I need to rest, I have also just accepted that it’s apart of me and I can’t change that.
More broadly, what are your thoughts on how the medical community understands and prioritizes endometriosis?
We don’t prioritise it enough. It’s not seen or talked about enough.
How do you feel endometriosis is represented in society or the media? What would you like to see change?
More people understanding and caring about it, more testing and treatment.
What would you like more people to understand about endometriosis?
That it’s debilitating and painful and that it isn’t just endometriosis, it’s so much more.
When you think about the future, what fears, concerns, or hopes do you have?
Being able to have children, if I’m going to pass it to my children. If my kids will have better support than I did.
Is there anything else you’d like to share?
No