What was the beginning of your endometriosis journey like before you knew what was happening?
The beginning was at the very start of my period. Back in 2017, I would have heavy periods where I would nearly blackout. I was first referred to gynaecologists who said “I was too young to have anything wrong with me” they put me on the pill and let it be. I ignored it. Until I started losing weight without trying, lost a lot of hair, wasn’t myself.
When were you diagnosed, and what was your journey to getting diagnosed like?
I was diagnosed last year March through an MRI. I had an idea that I would have endometriosis due to the people around me having it. However I’m still in the process of finding out what stage and how bad it is. I have a laparoscopy coming up soon.
What did it feel like to finally have a name for what you were experiencing?
Last year March, I was admitted in hospital where they gave me my MRI result from last year February, I honestly had no reaction. I still in a way haven’t processed it.
How does endometriosis show up in your body and daily life?
It affects my daily life in many ways. I used to be someone who used to play sports, go gym, and was overall an active person. But chronic fatigue took the best out of me. And my flare ups aren’t easy as they aren’t predictable. However I’m getting through it
How would you describe the pain or physical challenges of endometriosis?
The pain varies, sometimes it’s dull, sometimes it’s sharp, and sometimes it’s my whole body.
Do you have “good days,” and if so, what do they look like?
I have around 4 good days, where I’m in no pain, my skins clear, my mood is above the roof and I love myself. But then I crash the next day. So I always have to prepare myself the night before.
How has endometriosis affected your education, work, routines, or ability to make plans?
As a uni student, it has affected me a lot. I have been in hospital quite a bit but I haven’t let it affect me. I have done my exams and passed every exam and now going into third year. Not only that.. but I am now training to become a Special (Type of police officer)
Has endometriosis had an impact on your finances or access to care?
Yes it has affected my work. I had to drop out of my work due to me being unwell. I used to work three jobs now working 1 which is whenever I’m up to it. Having people around me to support me financially is quite a challenge but a blessing
What has your experience been like with doctors, specialists, and navigating the healthcare system?
It’s been complicated to navigate this with certain doctors. I have been in and out of hospital so many times where I’ve felt misunderstood. But I’m grateful for their effort and time
What has it been like to live with a condition that often isn’t visible to others?
I think explaining to others is quite a challenge but it’s important to let them know and let them understand on how life actually is. Because my fatigue is their 3 days without sleep.
How do you feel endometriosis is represented in society or the media? What would you like to see change?
I am glad there are people out there speaking about this illness. It’s something that will never go and that’s what’s sickening. It’s a lifelong disease which people don’t understand. For me i think people having an awareness and understanding how one person who has endo can suffer completely different to someone else who has endo. Everybody is different. And the media is doing well so far about speaking up. But as someone who comes from a cultural and religious background, my page is for people to understand I’m here to break the cultural norm, and for them to speak about things we aren’t usually allowed to speak up about.