I've been diagnosed from a scan - Feeling invalidated because keep hearing 'only surgery confirms diagnosis'

[snowflakemidnight]

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!

[Lindle]

When endometriomas are found on ultrasound it is a diagnosis as your GP says. These endometriotic cysts have a characteristic ground glass appearance that can be distinguished from cancer. It is incorrect that endo can only be diagnosed from a lap - in fact many laps miss it because the surgeon doesn't have sufficient expertise in diagnosing endo or endo can be outside the peritoneal space where a lap can't look. It isn't either/or - combined diagnostic procedures are often required. Please be aware that endometriomas are often/usually a sign of deep endo elsewhere and a lap should be done by an endo specialist.

[Hidden in reply to Lindle]

Hi Lindle, You've pointed out some very important information there. Months ago, I had a visit to the A&E and had a lap for suspected appendicitis. It turned out to have been a ruptured endometrioma. Months later, I finally managed to get an appointment with a gynaecologist to try to follow up, and she was able to tell me that because I'd had an endometrioma, I did have endometriosis (no one offered this information earlier, only when I asked directly). It wasn't suggested to me that a diagnostic lap for endometriosis might be useful to me. So, when I next arrived at A&E (twice over a weekend), it finally occurred a very kind gynaecologist that she could offer to schedule me for a diagnostic lap and treatment of endometriosis. I was looking forward to the treatment part. However, the diagnostic lap was done by a gynaecologist who did not have a specialism in endometriosis. She did manage to observe the endometriosis and recorded that it was stage IV (thank goodness!), but it wasn't within her skill set to treat it. So, now I have a follow-on referral for an MRI & then consideration of what to do next with their multi-discipline team.

In hindsight, it would have been absolutely heaven-sent if at the first surgery, they'd had the skill/experience/presence of mind to note that I had endometriosis and to line up someone to talk to me about a proper diagnostic lap... rather than waiting for me to show up at A&E again.

On the plus side, on the following trips to A&E, when they put me in the surgical observation ward, the surgeon did understand when I told her I'd had a ruptured endometrioma before, so she sent me over to gynaecology instead of doing a second lap to look for appendicitis (which I didn't have). *Whew*. So much I wish I'd known!

Overall, it was a very strange experience. I've more or less been left with the impression that GPs aren't really very good at identifying the possibility of endometriosis (I think a patient more or less has to offer the suggestion for consideration, because it won't occur to a GP?), and it takes a gynaecologist to entertain the idea.

[snowflakemidnight in reply to Hidden]

Gosh you have been through a lot, I'm sorry. Good luck for your MRI. I think I will need one of those at some point later this year (I'm waiting for an appointment with a gynaecologist).

I actually had the opposite experience with my GP - she picked up on it straight away from my symptoms, and I didn't suggest it to her as a possibility, but maybe that is quite rare.

[Hidden in reply to snowflakemidnight]

Hi Snowflake, I'm glad to hear your GP picked up on it. That's encouraging. Although I've had a strange time of things, I thought to write it down so that just maybe you could ask the questions at the right time, and not have to go through that. I really wasn't aiming at simply having a winge. 😉😆

[snowflakemidnight in reply to Hidden]

Don't worry, I understood why you were telling me your story and it is really helpful to hear other's experiences. 🙂 I am not expecting to be offered surgery this year with everything being delayed by the pandemic. I have already waited four months for just a gynae appointment on the telephone and I haven't even heard about a date for that yet. 😐But I am not in as bad a situation as some as my pain is not very frequent at all, so I know I am not high priority.

[snowflakemidnight in reply to Lindle]

Hi Lindle, thank you so much for your reply. It has really reassured me. It does frustrate me that even on the Endo UK website, on the page about 'getting diagnosed' it doesn't make it clear that some women get diagnosed from scans. I wonder if they need to update their information.

Thank you also for mentioning about the severity of the endo. I had read online that endometriomas indicate severe endo, so I was thinking that mine probably is pretty bad. Thankfully, I do not have bad pain mostly though.

[Lindle in reply to snowflakemidnight]

There is a lot of inaccurate info on the Endo UK website. The evidence you need is at 1.3.3 of the ESHRE guideline:

'Conclusion and considerations

It can be concluded that ovarian endometrioma can be diagnosed and excluded by TVS. One limitation is that small endometrioma could be missed. For the diagnosis of ovarian endometriosis, TVS is less operator-dependent and can be applied more widely. The GDG recommends that clinicians base diagnosis of ovarian endometriosis on the recently published ultrasound characteristics of ovarian endometrioma (Van Holsbeke, et al., 2010).

Recommendations

Clinicians are recommended to perform transvaginal sonography to diagnose or to exclude an ovarian endometrioma (Moore, et al., 2002).

The GDG recommends that clinicians base the diagnosis of ovarian endometrioma in premenopausal women on the following ultrasound characteristics: ground glass echogenicity and one to four compartments and no papillary structures with detectable blood flow.'

eshre.eu/Guidelines-and-Leg...

[snowflakemidnight in reply to Lindle]

Oh thank you for this, Lindle!

[Hidden in reply to Lindle]

Hi Lindle.... When I had an ultrasound (TVs), the technician told me she was able to identify that there were cysts, but that the type of cyst (e.g. endometrioma or not) was not possible to identify. From what you've described above, it kind of makes me think that they are meant to be able to at least try to tell if the are endometriomas. I'm feeling annoyed in retrospect that they "sort of" tried to check for endometriosis, but didn't really try very much. That appointment was pretty much a dead end with no useful information. Grump, grump.

They've had a look now with a lap, so ok.... But I'm still annoyed.

[CurlyandConfused]

Endometriosis cysts (endometrioma) are seen on ultrasound. In that case, they can diagnose it. But many women with endometriosis do not have these cysts. in that case, only a lap (or sometimes an MRI) can tell.

[snowflakemidnight in reply to CurlyandConfused]

Thank you for your reply

[TennisAM]

You don't need to worry, surgery can be used as a diagnostic tool but unless they treat it it is a risk to have general anaesthetic to diagnose only. If you want the endometriosis treated and removed from wherever it is then of course do push for a surgery. I was diagnosed by symptoms only, then 3 years later the symptoms were out of control so I had a surgery. Many samples were taken. None of these came back as positive for endometriosis. My (very experienced) consultant said they all looked like endometriosis, that was good enough for me. Sometimes the lab can say its not endo when it is.

I would say you are diagnosed with endometriosis, it isn't suspected, you just don't know the extent of it elsewhere in your body. If you need an op to improve the symptoms then by all means push for that. X

[snowflakemidnight in reply to TennisAM]

I see. I am planning to push for a lap (if it is not suggested/recommended to me) because I am concerned that my endo is severe, given that I have an endometrioma, as I have heard and read that this indicates either stage 3 or 4 endo. I would just really like to know how bad it is. That is very strange that the lab couldn't say whether yours was endo, but it's good to know that your diagnosis still stands despite that. x

[TennisAM in reply to snowflakemidnight]

If you have a bsge endometriosis centre near you (check the website to see if there is) it's important you are referred there.

If there is a centre then i would check the reviews of the consultants mentioned on the bsge website.

Good websites to check reviews are:

Doctify

Iwantgreatcare.org

Gooddoctor.com

Topdoctors.co.uk

You are allowed to specify who you want to be referred to on the form

If there isn't a centre nearby then it will be a referral to general gynae. If you have any severe bowel symptoms I would insist on a referral to a colorectal surgeon too. If general a gynaecologist does the op it's unlikely they'll have the skill to work on any bowel endo.

Best wishes

[snowflakemidnight in reply to TennisAM]

Thank you. I think there is a centre not too far from me, but I've been referred by my GP to a general gynae at my local hospital I think. Thankfully I do not have bowel symptoms.

[TennisAM]

Why do your friends and your boss not believe it? There are plenty of medical problems that can't be seen from the outside or even seen. Send your boss some information from endometriosis UK website to read. If your friends aren't supportive it's worth considering whether they are worth being friends with xx

[snowflakemidnight in reply to TennisAM]

I think there is a lot of misinformation out there. As I discussed with 'Lindle' in the comment above, even on the Endo UK website in the 'getting diagnosed' section, it doesn't say anything about some women being diagnosed through scans. I worry this is spreading misinformation as it's very unclear. I read quite a lot of online articles about endo as I'm very interested in it, and there is never any mention of women being diagnosed through scans. It's always 'surgery is the only way'.

I'm not too worried about the situation with my boss, but if it comes up again, I will see if I can find something to back up what I'm saying. But as for my friend. Well, I totally see what you are saying. Normally I would agree. With her, I think she is being like that because she has very severe endo and is ahead of me in terms of her treatment (she needs a second lap, I've not even had an initial gynae appointment yet), so I think she is merely repeating things that doctors must have told her, or maybe things she has read online (very likely on the Endo UK website!). But, I feel a bit more confident now from the responses I've had today that my diagnosis from my GP is correct, so I won't let it get it to me in future!xx

[TennisAM in reply to snowflakemidnight]

As she has endo I think she should be more sympathetic, not less.

You're right, she's probably repeating misinformation from doctors.

I have friends who have never had an op but we know they have endo as they have classic symptoms. Very painful menstrual periods and the pain starts days before the bleeding.

Laproscopy is considered the gold standard for diagnosing endometriosis but it definitely isn't the only way.

I guess endo UK haven't added scans as a diagnosis method because only deep endo (5mm or more via MRI if they have the skill) and endometriomas are seen on ultrasound scans. This is due to lack of skill here in the UK.

x

[snowflakemidnight in reply to TennisAM]

Well, she has shown sympathy in other ways, like for my symptoms, for example, but she's not very tactful with certain things. If she thinks she's right about something, she says it like it is absolute fact. She's someone who sees things in black and white, and it's quite hard to tell her when I know she's wrong about something. (I do usually tell her eventually but it takes me a while as I hate confrontation and find it very difficult. 🙈) But, she's a good friend in other ways, and I have a lot of sympathy for her because she has really terrible endo with much worse symptoms than me.

I do wish there were better information out there. I hope Endo UK can improve theirs on their website at some point.

It would be good if they would just add a sentence about it to explain that surgery isn't always the way.

Thanks for all your replies today - much appreciated x

[evilpunkypie]

i got diagnosed recently by tv scan..they found 2 endometrial cysts and i have currently had an mri but i dont get my results untillmy consultation on the 15th of this month

[snowflakemidnight in reply to evilpunkypie]

That is interesting to hear, thank you for your reply!

[Poppy96]

Hi, I was diagnosed through scans last year! After years of problems and this had be my third set of scans in 6 years. Weirdly I wasn’t surprised by the diagnosis and my doctor had also diagnosed it months before I had it diagnosed again by the sonographer.

They didn’t recommend diagnosis surgery at the time just based on the fact that scar tissue could exasperate the current situation. Unfortunately that does mean I don’t know what stage mine is currently at.

But I would take it as a valid diagnosis. It firmly explains all my symptoms I have had for the past several years. And as it has got worse it explains why they could see it on scans now and not previously.

I understand what you mean in terms of people not believing, unfortunately I have noticed this doesn’t seem to change even if you have the surgery for confirmation. I think it’s mainly due to the unawareness of the condition and the lack of understanding others have.

All I would say is just make a point to offer to educate them on endometriosis if they don’t want to be then just try to ignore them. It’s a hidden issue for so many of us and that is the struggle. But we know our experiences and that’s all that matter.

Stay positive snowflake 😊

[snowflakemidnight in reply to Poppy96]

Thank you for your reply, and sorry for my late response - it totally slipped my mind.

It's comforting to hear from someone else diagnosed by scans. It's interesting to hear they didn't recommend surgery for you. I hope I won't need to have it either, but I am not sure. I suppose it will depend how big the cyst gets on my ovary.

Thanks again for your kind words of support

💕