Medicine has advanced so much, why is surgery still the only way to diagnose this disease that, according to the WHO, affects 10% of women and girls globally.
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Endometriosis is very challenging to diagnose, even when you’re looking directly into the pelvis with a camera. The typical appearance is dark red / black spots often called “powder burns” but it doesn’t always look this way – it can look like blisters which can be clear, yellow or orange. When it doesn’t look typical, it’s often missed even in a laparoscopy (somehow not all gynaecologists are qualified to diagnose and treat the second most common gynae condition after fibroids which is shocking).
Often it’s on the surface only and very difficult to detect via imaging. Endometriosis deposits that extend far below the surface are easier to detect, as are endometriosis which is deep infiltrating endometriosis of the ovary (usually called chocolate cysts).
Endometriosis cells are very similar but not identical to uterine lining cells – the differences are being studied and there have been suggestions that the way these deposits differ may assist in diagnosis in future but this is very early days.
Others believe that the route to finding better diagnostic tests is to identify what causes endometriosis in the first place, since even this is unknown – e.g. if it’s a genetic predisposition then that may prove useful for future testing.
The sad fact is that the real reasons we don’t know what causes it, how to diagnose without surgery or how to cure it are most likely due to a lack of research funding for all gynae conditions. There are studies happening internationally but it’s a complex condition that’s not well understood and it’s still taking 6-10 years on average for diagnosis in most countries.
There’s a limit to what medicine can do. It’s like that Theranos blood test machine: sounds cool in principle, but in reality, it’s physically impossible to get that much data from a drop of blood.
So first of all, there are lots of ailments that have similar symptoms as endometriosis. For instance, I had adenomyosis, and my lining also didn’t grow in the correct spot, but it wasn’t on the outside the uterus. Also, since the lining is shed every month, it’s not thick enough to be seen by imaging. Anyway, long story short, you ‘ll always need to biopsy the tissue to get a more accurate diagnosis.
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