Hello all. I was diagnosed with endometriosis at the end of last year from an external ultrasound scan. (They also tried to do a transvaginal one but my pain was too severe and they had to stop). However, I was told by the sonographer that my external ultrasound gave them a very clear picture because I am slim. When I got the results from my GP, she explained that they found a 3cm endometrioma on one of my ovaries, so I've been diagnosed with endometriosis already. When the GP told me this on the phone, I queried it because I had heard again and again that only surgery confirms diagnosis of endometriosis. But she told me that surgery would look for more endometriosis in other places, other than the ovaries, but that I do have endometriosis because I have an endometrioma (plus some symptoms of endometriosis).
I keep reading time and time again in articles about endometriosis that only surgery definitively confirms it (e.g. in a recent article about endo in The Telegraph), and I'm finding it very frustrating that I keep reading this in the media and there is never any mention of some women being diagnosed initially from scans. I worry that this invalidates my diagnosis of that my GP is wrong. A couple of people in my life, including my boss, I have told that I have been diagnosed with endo by my GP, and they don't seem to believe me. (I did tell my boss that I would need a lap to confirm diagnosis). But still, my boss seemed disbelieving of what my GP has told me, and said to me that she was told she 'might have endo' once (as she was having trouble conceiving) but then she had a lap and they said she didn't have it after all. A friend (who has severe endo diagnosed from a lap) recently said to me she was sorry to hear that I *might* have endometriosis and she emphasised the word 'might'. I'm feeling quite fed up and upset that some people are making me feel like I am lying or that I could be making a fuss about nothing and I might not even have it, even though I've been told my GP that I have endo. Plus I've had terrible periods my whole life, so it makes sense. I have had to wait until the age of 36 to get this diagnosis, so still being/feeling disbelieved by some is very hard to deal with.
Should my GP have worded it differently? She did not say that my endo was suspected. She said that I have it.
I bought the Endometriosis UK paperback book by Professor Andrew Horne and Carol Pearson recently and I'm sure that somewhere it mentions that more and more women are being diagnosed from scans these days, but I can't remember what page I read that on. I wonder if this is because technology has improved over the years and sonographers are better now at identifying the endometriomas?
If more and more of us are being diagnosed from scans these days, then why does everything I read in the media about endometriosis always say that 'only surgery can definitively diagnose it'? Is this because sometimes scans get it wrong? Are there any women who get told they have endometriomas from scans, and like me, get told they have endometriosis, but then when they have a lap, the surgeons don't actually find the endometriomas? Do they take away the endometriosis diagnosis at that point?
I feel that if my diagnosis is correct and scans can sometimes spot endometriosis (if you have an endometrioma), then this should be more common knowledge and should be mentioned in articles in the media, otherwise women will all continue to believe only surgery can diagnose it and it makes women in my situation feel invalidated and like we don't know what to believe. I have also noticed others similarly confused on this forum. Some people comment very bluntly to others 'only surgery can diagnose endo', which, as far as I have been made aware by my GP, is not completely true, and is very invalidating and confusing if you have been told you do have endometriosis after your scans.
My other thought, is is there a chance my 'endometrioma' could actually be cancer and has been misdiagnosed as endo? I'm in my 30s so I'm hoping this is very unlikely, but until I get the lap I think I will continue to worry about this, especially when people like my boss and friend don't seem to believe I have endo. It makes me paranoid about this. My GP has thankfully not mentioned this is a possibility for me though.
I would be interested to hear back from someone from Endometriosis UK about this if possible! (and thoughts from anyone else too, of course). Thanks for reading!