Pain, but no lesions?: Hi, Just had my... - Endometriosis UK

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Pain, but no lesions?

LisaJ50 profile image
5 Replies

Hi,

Just had my ultrasound report through and signs of returned endo but also put this message in other observations :

The patient experienced significant focal discomfort on TVS examination of the rectovaginal and Rt uterosacral regions! No obvious pelvic lesion could be identified.

Anyone else had something similar and if so was cause discovered? Thanks!

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LisaJ50 profile image
LisaJ50
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5 Replies
phoenixoncemore profile image
phoenixoncemore

Ultrasound is BS for finding endometriosis. As far as I'm aware it would only show up on ultrasound if it was very severe (read: big) but even small amounts can be horrendously painful. But that 'normal' can stop any further investigation and consequent diagnosis and treatment.

Years later I managed to read the report of my ultrasound which was reported as 'normal' because they saw no endo. In the report though, it says that my uterus is pulled to one side, with one ovary tucked in under that they couldn't get a good view of and one up above. This wasn't mentioned in the conclusion as they found no reason for this. The reason, I now know, was the endometriosis on the ligaments holding everything in place and the nodule pushing on them contorting my anatomy into this odd position.

Unfortunately, when a GP asks for an ultrasound they have to justify it with a question, in my case "?endometriosis". When it is reported the sonographer writes what they found (and some are more thorough than others) and the conclusion answers the question asked. But often the GP will only see/read this answer, meaning that things can be missed. It's easy with hindsight, but I do think this system is wrong. Always get a copy of the report!

Cabs profile image
Cabs

I had an MRI and no lesions or endo was found on it.At that point my Gynae told me you can go on the pill because of the pain there is no endo.I had laughed at the gynaes competence because even though deep endo wasn't found it doesn't mean there is no adhesions etc.My lap confirmed widespread endo and adhesions.i think ultrasounds are only useful for picking up any cysts and more nothing else.

I'd agree that ultrasound is not always the best for finding endo, and it depends also who is carrying out the scan and what equipment they are using.

I had an ultrasound in july 2015 right at the start of my journey towards diagnosis where they found what were described as paraovarian cysts and a hydrosalpinx in the right fallopian tube. The report sent back to the GP said nothing suspicious was found and did not mention endometriosis.

I had another scan carried out in july this year by a specialist radiographer at a bsge centre that found 4 significant endometriosis nodules. All of these nodules are 2cm or bigger and it's likely that this is not the full extent of my disease but these are the bits of it big enough to be detected by ultrasound - my understanding is that it doesn't generally show anything smaller than 1cm. A clear US doesn't mean you don't have endo.

Hope264 profile image
Hope264

I agree ultrasounds rarely useful to show endo, if your sympotoms are back it is probably back or was not found / removed. If you are already recieving treatment from a GP and specialist doctors that listens to you, perhaps it is wise to ignore the notes/findings on an ultra sound and go on with what you know in your body.

I don't believe ultrasounds should not be used to eliminate endo by GPs. I had several, including an internal one before stage 3? DIE was found right through my uterosacral ligaments incidentally and lucky for me by a surgeon that could and would help. Now years later, I just have a general gynacologist who helps me work on my lifestyle and pain managrment and tells me she does not need imagry to understand what sympotomsI live with. I don't have access to a specialist team I would need to get surgical help but If I was in UK I would try and access the free? BSGe? health services there that people on this site have helped advocate for women there. I don't know where you are located but good luck with your future trestments.

LisaJ50 profile image
LisaJ50

Thank you for all your replies! Was just surprised to see it in the notes as at the time he seemed to know what he was poking and that it was going to hurt! They also found other bits and pieces so suspect will go for lap and get a better idea of what's going on

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