The Physical and Emotional Pain of Endometriosis

I started seeking out help the first time I blacked out from the pain. I was 13 years old. I’ve seen doctors and specialists in Canada and the US for over 20 years and was told I “likely” had endometriosis. Unfortunately, in most cases, the only way to get a definitive diagnosis is through surgery since it very rarely shows up on ultrasounds. My experience with the medical community has been disappointing and frustrating. Most practitioners told me there was nothing they could do since there is no cure and I just needed to live with the pain. I was prescribed pain killers and birth control, and those did very very little to reduce the severe pain. I advocated for myself and pushed to get surgery to remove the lesions and was denied every time because of the likelihood that they would grow back within 4-5 years.

For a disease that affects such a large percentage of people, very little is known about it and there are few specialists. I finally received actual care when I was struggling with infertility. My reproductive endocrinologist was sympathetic to the pain and referred me to a specialist who recommended surgery. After my surgery I was diagnosed with severe endometriosis and adenomyosis and went through a 4 hour surgery to remove as many lesions as possible. My bladder, bowels and uterus were fused together with endometriosis. My right ovary was twisted and fused to other organs. My appendix was riddled with endometriosis and had to be removed. Everyone was shocked that I had gotten used to living with so much pain but unfortunately, when you’re given no options for real pain relief, what else are you supposed to do? All in all, it took 23 years for an "official" diagnosis.