Do external ultrasound scans (and those who interpret them) often miss early gynaecological cancers and endometriosis?

Do external ultrasound scans (and those who interpret them) often miss early gynaecological cancers and endometriosis?

The gynae doc (not oncology or endo expert) who read my scan said 100% not ovarian cancer.

How can she be so sure???

I’m sure there are people on here who have been misdiagnosed. Or just not diagnosed.

Btw when asked directly, she said possibly could be endo but because of my age (52 but still having periods) they wouldn’t do anything if it was that.

She said it isn’t normal to have pelvic cramp daily but couldn’t say what it was only that it wasn’t OC (not sure she should claim 100% certainty on that).

No further forward.

She also said not to repeat ca125 which has been 58, 65 and 48 respectively.

GP seems to be leaving it at this.

I also thought because bladder is close to uterus that there was a connection because cramps seem stronger after passing urine and lying down.

Anyone have any ideas?

I’ve to hand in urine sample but it’s not an infection I’ve had since February.

[TennisAM]

Hi,

I'd recommend speaking with another GP as its about your wellbeing not your age. So if you do have endometriosis it should be treated.

Yes endometriosis is regularly missed/not seen with both external and internal ultrasound. I don't know how OC is diagnosed so not sure how accurate they are. Keep persisting with the doctors. Did you ask your general gynaecologist about endometriosis?

As far as I'm aware endometriosis increased CA125 levels so the raised levels might indicate endometriosis. If you Google it you'll see what I mean.

They should put you on the pill to see if your symptoms improve, if they haven't already.

Are you in the UK?

[Hidden in reply to TennisAM]

Thanks for your reply roshsp2012.I’m on HRT.

The gynae said it might be endo but didn’t commit to anything other than to say it wasn’t OC.

I though it might be connected bladder because when I empty bladder I can feel the heat/cramp more.

At the moment I’ve just have three periods in the space of 5 weeks so I really don’t want to take the pill as well (I don’t think that would help to be honest).

Will ask GP if I’m supposed to just accept this and see if that prods him into doing anything - to be fair he didn’t hesitate to make the referrals.

[TennisAM in reply to Hidden]

No worries, as far as I'm aware HRT isn't great for women with endo. Did you get increased pain since starting HRT? Am I right that it increased oestrogen levels? Endo is an oestrogen lead issue so reducing estrogen is normally a priority but do understand there would be other symptoms to deal with which is why you're on it.

Do you get pain every time when you pass urine?

[Hidden in reply to TennisAM]

I think if it is endo I can live with it. I just would like to know. The pelvic discomfort first came when I was switched from patch HRT to oral, and I noticed I had cramping and a heat like the beginning of a period and this would happen whenever I lie flat. If I went to the toilet to pass urine and went back to bed again it seemed worse. It is not painful (I have a high threshold for pain) as such, maybe a one or two out of 10 but it is different and nobody can tell me it’s normal.

The Gynae lady did suggest that I stop the HRT (which I did in February for about 6 to 8 weeks but it did not stop the discomfort in my abdomen so I restarted it again) but I worry I’d go off my head again. 😕

[TennisAM in reply to Hidden]

I understand. Have a look at Intersistial Cystitis as its possible that your bladder discomfort might be that. It varies in symptoms from person to person. From my experience of endometriosis on my urethra. It would be moderate to severe pain when I pass urine then it would stop.

Hope you get it sorted

[MMich15]

Hi there - I second everything roshsp2012 has said. In my experience no one has ever been able to diagnose endometriosis or cancerous cells through an external ultrasound. I had my first ever internal ultrasound with an endo specialist this year and it is quite drastic the difference in terms of what she could spot and read from the ultrasound - however she’d never be able to 100% diagnose what a cyst or growth is - that’s why they always (should) biopsy anything removed after a surgery. An MRI gets you a little closer as it can do some reading of the growth contents but my understanding is even that isn’t conclusive.

Please don’t let them take your health for granted, whatever anyone’s age it’s ridiculous to expect them to live with pain when something can be done. Wish you the best of luck and health x

[Hidden in reply to MMich15]

Thank you Mary 🙏🏼

[Rhhh]

I second the fact that my mri picked up aloit more whereas internal and external ultrasound said there was no problem. My mri picked up highly suspected endo immediately and was booked for emergency laparoscopy and endo excision straight away which Im having Tuesday,3 wks since mri results. So personally, Id push for mri referral. Big hugs xx

[Moon_maiden]

Hi I had fibroids show on a scan last November, 51, then diagnosed endo Dec, didn’t show on a scan, apart from a little on MRI this year. Had lap Feb which confirmed endo, removed what he could get to. My uterus was enlarged, more fibroids than showed on scan. I then tried six Zoladex, did nothing for the pain. Had hysterectomy and excision of endo last week, turns out adhesions all over the place, things stuck etc. I haven’t yet decided if it’s helped as nothing feels like it’s gone.

Tried to keep it brief, please ask away if you need to.

Please don’t let them bring age into any of it, I may have been lucky to have met an open minded gynae from the off. There are research papers out there about older women and endo.

Take care 🙂

PS as far as cancer goes, should have biopsy results by early next week, he sent everything he took out for testing.

[Hidden in reply to Moon_maiden]

Thanks Moon maiden 🙏🏼That’s helpful to know that regarding our age. The gynae said endo is cyclical which I know from researching that it’s not necessary related to ones cycle at all. It depends where is has grown. Her rationale was once I reach menopause the cramp would stop if it was endo. But when might that be? And what is it?

The consensus here is probably that a fertility gynaecologist is not the best person to interpret photos of an external ultrasound for endo.

[Hidden in reply to Moon_maiden]

Good luck 🙏🏼

[Moon_maiden in reply to Hidden]

Thank you. Not sure what result I’m hoping for, if it did show, likely explain weight loss, otherwise may have to start that journey again. Which sounds odd, but possibly no more than wanting op in the first place 🤦‍♀️ 😆You’re right about who you saw, it’ll need someone more endo based.

I think when mine got worse it was more with cycle, but as it increased was daily and constant, couldn’t sit or stand for long. Do push, although exhausting, to get the right answers. 🙂