This lived-experience story is published in the writer’s own words. For current general health information, visit EWA’s What is endometriosis? page.
My story begins at age 13 which is when I got my first period.
I had extremely heavy periods, to the point where I’d be wearing night/bedtime pads during the day and I’d run out within a week… I was always told that this was 'normal', but even at that age I knew that it wasn’t right. I can’t remember much of my time in high school and how my endometriosis affected me as I’ve blocked it out, but I remember I was always tired and fatigued. I also remember I used to pass big clots until I got put on the pill, but again that was 'normal'…
It wasn’t until my early 20’s that I decided I needed to push for myself. I started to remember the pain and the side effects on my physical, mental and emotional state… I’d be tired and fatigued even though I hadn’t done much for the day, and I noticed my mental health took a huge decline (this is also probably why I can’t remember much of high school…)
I’d be in excruciating pain through the night where I’d be crying myself to sleep - I described it to my mum that it felt like someone was stabbing me with a blunt knife, over and over again. I was nearly fainting at work, I’d have extreme lower back pain, joint pain, IBS symptoms (like dysmenorrhea) where nothing would happen or it would ALL happen. I’m always bloated, would get a burning sensation even though I’ve never had sex… and on top of that, I developed PMS and PMDD.
When it started to have an effect on my work life, that’s when I decided to see the doctors about it because I need to work in order to live - how could I live like this?
But, of course, when I went to the doctors, I was dismissed.
I still remember one doctor telling me “you don’t look like you’re in enough pain to have endometriosis” and that’s what started it for me… it took me years of going back repeatedly asking for a simple diagnosis surgery, until the age of 28 when I finally got booked in for the surgery. It was because I had a breakdown in the doctors office… I explained that it wasn’t fair that I keep coming back over and over again, trialing every pill they have even though they stop working after 6 - 12 months, and that I continue to be dismissed even though I know there is something wrong with my body. It felt like my body was constantly yelling at me for help for years! Even when I lost weight and got healthier, it didn’t change my endometriosis symptoms…
I was finally referred and diagnosed last year in March with Stage 1 Endometriosis on my left fallopian tube. Since the surgery, I’ve had my period pains come back in 3 month increments… it’s sad that we literally have to fight for a diagnosis for a disease that acts like cancer. Mine is only on my fallopian tube for now but I know many have it worse. My heart aches for us wāhine (and other people who have this disease, now they’re finding it in children and rare cases of men) who continue to suffer.