“I always suspected my diagnosis was wrong,” Rebecca told me, “but doctors weren’t interested in investigating. I’d have weird symptoms and they’d sort of be written off as just one of those funny things that happen to people like you.” By “people like you”, her doctor meant patients with chronic fatigue syndrome. It’s a diagnosis of exclusion: you get it when you’re exhausted and in pain, but doctors have been unable to find anything physically wrong with you.
However, as it turned out, there was something physically wrong with Rebecca. In 2017, 25 years after she first received her misdiagnosis of chronic fatigue syndrome, she was diagnosed with endometriosis, a chronic condition in which uterine tissue grows outside of the womb, causing extreme pain. Six months later, she received the additional diagnosis of relapsing-remitting multiple sclerosis. She is now, finally, receiving treatment for both conditions.
Rebecca’s experience might be extreme, but it isn’t unusual. Women spend an average of seven to nine years in pain before they are diagnosed with endometriosis, according to Annalise Weckesser, senior research fellow in reproductive health at Birmingham City University. In fact, she tells me, it often isn’t until a woman is found to be infertile that she receives a diagnosis. Pain alone doesn’t seem to be enough.
Continue reading this article at the New Statesman