It took 22 years to get a diagnosis | Jacqui’s Endo Story
By Jacqui McAreavey
My journey with endometriosis began long before I even knew the condition existed.
I was almost 13 when I had my first period, and from day one it was brutal — fainting from extreme pain, missing out on social activities from exhaustion, and wearing night-time pads to school, in fear I’d bleed through my uniform.
At 16, my mum took me to the doctor after seeing me doubled over in pain. That was the start of years of medical gaslighting: “You’re just on the wrong pill”, “Have a baby and it will go away”, “It’s probably depression”, “Lose some weight”, and my personal favourite: “Are you sure it’s that bad, or is it just in your head?”
Blood tests always came back “normal”, except for low iron — “Eat more red meat.” An ultrasound for a missed period led to a PCOS diagnosis, but no answers for my pain.
By 35, I had done it all — lost weight, eaten the red meat, gone to the gym, endured what felt like my 20th pill—and I was still bleeding constantly, passing clots bigger than 50c pieces, and exhausted beyond words. Finally, a doctor heard me: “Jacqui, that’s not normal.” I was referred to a gynaecologist.
On 26 August 2021, at 35, a laparoscopy confirmed stage 4 (severe) endometriosis. It was devastating, but it was also the first time in over two decades that I felt seen. I wasn’t crazy. I wasn’t weak. I was right.
Now at 39, recovering from my second laparoscopy — this time with a bowel resection — I know this fight isn’t over. Each day is a challenge, physically and mentally, but day by day I’m growing stronger. I am louder. Unapologetic.
If you’re in pain and being dismissed, listen to me: trust your gut and keep pushing. If one doctor won’t help, find another. You know your body better than anyone.
At 22, I stayed quiet when a doctor asked if my pain was “just in my head.” The woman I am today would have walked out, found a better doctor, and demanded answers. So should you.
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