Information Post: The value of transvaginal ultrasound for endo.

[Lindle]

It is often said on here and other groups that ultrasound is of no use for detecting/diagnosing endo. This is most likely based on so many ultrasounds coming back clear. However, it is incorrect and potentially harmful for those with endo to be told this. This implies that the scan technology itself cannot detect endo.

Great strides have been made in imaging technology and it is about the training and technique of the operator and not the equipment. Basic sonographers in gynaecology departments usually come from a background of midwifery or radiography and will typically only have level 1 training. This teaches how to look for abnormalities affecting the uterus, ovaries or tubes - so just the reproductive organs. A tell tale sign is when the report only mentions the uterus and ovaries. Sometimes ovarian endometriomas will be found as these are well defined on ultrasound unless very small. This then acts as an endo diagnosis, that being ovarian endo.

Endometriomas are almost always associated with deep rectovaginal endo (severe disease) but these sonographers are not trained to look for it. There is a severe lack here not only of training but of understanding. If a basic sonographer finds an endometrioma they need to know that this is a sign of rectovaginal endo and if someone trained to look for it was called in it could be identified with immediate referral to a specialist endo centre following.

Level 2 sonographers are trained to look for non-ovarian endo and the cardinal sign for rectovaginal endo is a negative sliding sign. This means the uterus and bowel are stuck firmly together and indicates an obliterated pouch of Douglas (cul de sac) which in turn is the classic presentation of stage 4 endo. Sometimes the ovaries will be stuck to the back of the uterus (kissing ovaries) which would be a sign of a frozen pelvis, the most severe form of pelvic endo. Symptoms of rectovaginal endo will most often be left sided (although not always) and lower back pain, leg pain, pain with deep sex, bowel problems, and stabbing shooting pains up the vagina and/or bottom are often typical.

There are some who go on to gain advanced expertise in ultrasound detection of endo but these are usually attached to specialist endo centres in tertiary care or private only. That then becomes a catch 22 - you need evidence of deep endo to be referred to a centre but most of the advanced sonographers are in those centres. The fastest course to diagnosis of deep endo and referral to an endo centre is via a private expert ultrasound which typically costs around £300 for those with the funds.

We understand that BMUS (The British Medical Ultrasound Society) are looking into this. Even without access to an advanced expert in a centre or privately what we need is for all those being referred for ultrasound for suspected endo is a pathway that requires referral to a level 2 sonographer who is proficient in assessing the sliding sign. Dr Susanne Johnson, world renowned expert and educator in ultrasound detection of endo, from Southampton, said in a recent presentation by the BSGE that it is very easy to learn.

We are still some way from scans being able to identify superficial endo that affects just the peritoneum (pelvic lining) and this post clearly is related to deep endo, especially rectovaginal for which ultrasound is the first tool for a definitive diagnosis. GPs should be requesting that a sonographer with the appropriate level of expertise is applied in referrals so don't be afraid to point this out and also to gynaecologists sending you for a scan.

For those with clear ultrasounds done in general gynaecology the first advice would be to obtain a copy of the scan to see if it does indeed report only on the uterus and ovaries. The BMA gives good guidance here but feel free to pm for more detailed guidance.

bma.org.uk/media/2821/bma-a...

You then need to think about whether you might have symptoms of severe endo. Sometimes, rarely, severe disease will be present without symptoms but usually there are typical symptoms and signs. Click on my profile for a detailed post on endo symptoms.

Feel free to pm for access to a list of experts in imaging of endo.

Video by Susanne Johnson:

youtube.com/watch?v=O1IzSOw...(Not working as expected?)

File by Endometriosis Guidance and Information Resource UK (Endorevisited)

facebook.com/groups/1148144...

[Tracy_lou]

Really interesting 👏🏻 thanks for sharing x

[Iamyumyum]

That was very interesting Lindle thanknyou for sharing. How do you find where you can get the private scans done?

[Lindle in reply to Iamyumyum]

We can't name medical professionals on here but will pm you later. Am out at the mo with just my phone and am a bit useless using it!

[Iamyumyum in reply to Lindle]

That's understandable shug. Thank you that would be greatly appreciated.

[Ge0rgie51]

I’ve recently paid for two private TV US. As the sit and wait it out or have you tried swimming(?) GP approach was upsetting and frustrating.The first was at a centre geared up for 4D baby scans. So (obviously) I left disappointed as the radiologist had no clue about the above technique.

Luckily the second scan was with a consultant who knew about the above technique and at last I had some answers and a treatment path!!

[BloomingMarvellous]

Interesting and thank you. I also understand what has provoked your post and your desire to redress the balance. Right or wrong conversations can be exceptionally damaging for all manner of reasons and not in the end particularly fruitful with the value brought by differing views getting lost in the dialogue.

However, it’s also important to hold the other truth in the same biosphere as it’s reality for many of us. For many scans have not identified the endometriosis or adenomyosis irrespective of the level of training nor the technology used. This is true of my history and my family’s. There it is. It is as it is and not recognising this can be undermining of some experiences and can be very confusing. Scans are of enormous use but we need not to overegg their capacities even with current developments. Equally not to use scans well takes away an important and valuable part of the armoury in this and other diseases. Moderating our expectation in what we can achieve with any of our technologies helps enormously in the “absolutism” that can be too much found in medical exploration and discussions. Any of these methods identify a likelihood and all can work well or miss . We need not to let our desire for total certainty to muddle possibilities and realities.

The bottom line sad fact is we still struggle with not having a earlier detection method or one that can be easily delivered with a fine tissue level identifying ability. A reliable bio marker etc would be a boon. Scanning in a way is likely looking at a disease process at a more advanced , grosser expression some way down the line.

[Lindle in reply to BloomingMarvellous]

This post is taken from one existing on Instagram. It is important to redress any imbalance where ultrasound is concerned as it is not a matter of opinion whether ultrasound can detect endo. The truth is that ultrasound is the first line tool in the definitive diagnosis of deep endo and we should embrace this and do our best to educate doctors to request a suitably qualified sonographer. It shouldn't have to be this way but sadly we know that it is and it is endo patients themselves who have the tools to move things on by learning and speaking out.

Reliable biomarkers are likely to be decades ahead and we would have to ask what would we do with such a diagnosis even if it were possible to diagnose without any visualisation of lesions at all. What stage would we assume endo to be? What treatment would we propose? Would we just accept the diagnosis and treat medically without ever knowing what stage we were dealing with until the person was so crippled with pain from deep endo that had progressed, masked by medical treatment, as is the case now so often.

In my opinion anyway it is vital to identify deep endo early and I can't see any way that this will ever be possible without actually seeing it. The only way to do this is by definitive visualisation and as we move away from invasive methods definitive diagnosis by imaging will be all the more important as research into biomarkers progresses concurrently. There are experts who can now see peritoneal endo on scans and the aim is that all stages of endo will in future be identifiable by imaging. It isn't a case of imaging versus biomarkers but the value of biomarkers will be in reducing diagnostic delays when symptoms first appear, so that earlier imaging can be done to confirm severity of disease so that patients can then make informed choices about preferred treatment. We are now at the stage of imaging being a definitive diagnosis of deep endo and we have it in our power to speak out to bring training in line with advances in technology.

[BloomingMarvellous in reply to Lindle]

Agreed but in the meantime it’s important to distinguish between best practice and experience for many sufferers whilst pushing forward for positive care practice changes. The balance of accurate information needs to weighed sensitively against experience. Sometimes it can get lost amongst the desire to put across “corrected information “. Having nuanced conversations that allow the frustration to be given space is part of the push forward for better care. It all has a part to play. Practitioner education, information reviewing and understanding that outdated systems / attitudes can be a very real blocks or benefits to patient / medic relationships has to be part of that wider review. Misunderstandings both ways can cause significant issues with care pathways.

As to bio markers as a possible assistance- every method has its pluses and minuses. Absolutely we need great scanning but we also need earlier significantly less invasive detection methods. There are always cut off points and caveats to be considered in any new developments. That’s a given. There is currently a lot of great work being done both in the bio markers field and elsewhere which is fabulous news ( so decades away is hopefully a little unlikely.😊)

It’s a complex disease that needs multiple resources in its care and treatment as well as patience. I think we have understood so little of its process or talked enough of its far reaching consequences to date although the shift is happening. Edinburgh is hosting a world symposium next year and that’s a good step . The kindness and support of others as well as top notch information has been what’s enabled me to keep going and for that I am eternally grateful.

[CryBaby91]

I generally try to say that ultrasound scans are often not conclusive, mainly because of the inexperienced scanner lol. Which is often, like you say, the reason most have a clear scan. But I'll modify that slightly now to include the fact that an experienced sonographer would possibly have the ability to see things better. Thanks for the info very interesting! It makes sense that elements can be seen on the scan, such as the limited movement, providing a highly qualified person is performing the scan.

[Lindle in reply to CryBaby91]

It takes expertise to see deep endo itself but the sliding sign doesn't take a highly qualified sonographer to assess, it is a relatively simple skill for a basic sonographer to learn so hopefully training can be developed. But in the meantime women themselves can take a part in educating their GPs by telling them at the first point of care to request on referrals that a level 2 sonographer is needed with expertise in basic non-ovarian endo. This is all the more important now that scans are the first line in diagnosing deep endo..

[CryBaby91 in reply to Lindle]

I think that may be hard for some people though, especially those who don't have the confidence to push for particular things with their GP. Lots of GPs don't take us seriously after all, so even if they do ask they may be shrugged off. Definitely worth knowing though!

[Lindle in reply to CryBaby91]

It is hard I know, especially if a person is so used to being invalidated which for sure we have all been - in my case for over 20 years. What we need is for GPs to be given clear information and not by emails that they don't read but in training sessions. This all takes time though and, for example, on the group I run we have produced leaflets for members to take to their GPs with official references to guidelines and standards etc to back up what they are asking for.

[CryBaby91 in reply to Lindle]

Leaflets are such a good idea! Massively applaud being proactive and pushing for change it will only come if we all demand it.

[Lindle in reply to CryBaby91]

I really do believe that. We can and will complain till the cows come home about the uselessness of so many GPs but now that we have the power of social media that has allowed women to educate themselves so well, often with knowledge far exceeding that of their doctors, I believe we are the ones to make change happen.

[poinai]

Very interesting to see this posted here! I was diagnosed via ultrasound in 2019 so I was always confused when I saw everyone, including the NHS website, saying that wasn't possible.

[Sholla]

Hi Lindle

After many years of all sorts of symptoms l now believe its highly likely l have endo. I'm 60yrs old and had a hysterectomy that left one ovary and the neck of my cervix in 2015. Do you think a ultrasound would still be the first thing to do?

Thanks

[Lindle]

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