Ultrasounds/MRIs - My experience and why you need to advocate for yourself if they don’t show Endo!

[dot7]

Controversial take here on ultrasounds and MRIs, but I responded to another users query with the below info, and wanted to share it more widely as I think more people need to challenge their doctors when they are told the scans didn't show anything but you are still in pain.

I was diagnosed with severe endo 15 years ago by chance, because I had a cyst that needed removing and whilst doing the laparoscopy they discovered endo all over the place. I had been in alot of pain during periods but was told it was part of a womans lot etc. In the months prior to my laparoscopy I had multiple ultrasounds and an MRI and none of these scans showed any endo.

I went on 5 years later to have another laparoscopy as I was in a lot of pain and my previous diagnosis of severe endo made it harder for doctors to dismiss me, but trust me they tried. Again the multiple ultrasounds (NHS and private) only showed an ovarian cyst. When I had the laparoscopy they found I had deep infiltrating endo and an endometrioma. Again nothing had shown on any of my scans.

Got referred to NHS Endo clinic in London a few years later for pain, and again had multiple ultrasounds which showed nothing but ovarian cysts (thanks PCOS), and although the nurses and doctors in this clinic were very nice, I was dismissed, despite my other symptoms, based solely on the scans.

I went on in discomfort, and then saw a private gynae two years ago for severe pain. Had an MRI, which showed cysts but no endo. I explained to him that my scans never show any endo, but he was very dismissive (blamed it all on my weight and offered me weightloss injections instead - he can sod off). So I have been in pain for a couple of years, largely due to exhaustion with advocating for myself and being dismissed.

I decided to see another gynae privately a few months ago, they did an ultrasound and shocker nothing showed up. But I advocated for myself to have a laparoscopy based on my symptoms, and the fact I had to have surgery anyway by that point for a vaginal cyst, so as they were knocking me out couldn’t they do the lap too at the same time. The doctor agreed tentatively and only because of my existing history with endo.

I had the lap last week and wouldn’t you know it I had endo on my uterus, ovary and behind my uterus, and my specialist agreed the laparoscopy and removal of endo was needed.

This long message is to say ultrasounds are not the gold standard test for diagnosing endo. I have had ultrasounds that have reported I have a bifurcated uterus when I do not. They are painfully inconsistent in there quality, and I have never had one done (even by specialists working in the NHS endo clinics) that have spotted a single dot of endo in me, despite me being consistently riddled with it when I have eventually had surgeries.

Also, I have had a mirena coil for 15 years and am lucky enough not to have periods with it, but my endo still grows internally (just not as much), so if a Doctor ever says that you cant have any endo because of the coil or birth control treatment you are on, correct them immediately. You can still have it.

The above isn’t trying to scare people and is of course my own personal experience, but I see too often people saying that their scans are clear, the doctors have dismissed them and they feel demoralised and confused. You are NOT crazy and the discomfort you feel is valid. The scans being clear of endo doesnt mean you don’t have it. Trust how your body feels.

Random bits of info as I think some people in this community can be a bit too strict about the best doctors/treatments etc:

- There are plenty of great gynae docs/surgeons who arent affiliated to NHS endo clinics, so don’t feel that if you are treated by someone who isn’t linked to a clinic you are having subpar treatment. If you are able to go to a clinic then great, but if you feel dismissed there it is okay to go elsewhere. The best treatment I have had are gynaes who specialise in endo but aren’t affiliated to a clinic.

- I felt better after diathermy treatment than excision treatment, so again each person will respond differently to different treatments. The excision might be gold standard but I will take diathermy treatment any day.

- My private lap cost approx GBP 3,500.00, I luckily have private insurance, but if you are thinking of going private and don’t have insurance and wanted a general idea of approx costings (consultations GBP 180-200 each, ultrasound GBP 300, surgery GBP 2,500).

Hope some of the above info from this old timer (am only 36) is of use. 💛

[Lindle]

In terms of scans it really does depend on the skill and training of the operator (TUS) and whether the right MRI protocol are used. We need more sonographers in gynaecology departments with a minimum of an ability to assess the sliding sign and identify RV endo early. I think BMUS are working on this but it will take time. As you say the problem is when the results are negative. When endometriomas are identified this has been a confirmed diagnosis for a long time now and DIE identified on scans is now treated as a confirmed diagnosis. This is important because it means referral can be made to an endo centre at the earliest opportunity without the need of an invasive diagnostic lap only to be closed up and referred on anyway. But scans are not the gold standard and neither is a lap. Laps often miss deep endo and it retroperitoneal it won't show anyway. Also histology for DIE often comes back negative due to the fibrotic nature of the disease and people are then told they don't have endo. There is no one right diagnostic tool - it requires a combined approach and high expertise with a systematic approach applied.

With regard to being treated outside of centres, in England the treatment specification for severe endo is laid down in law and must only by multidisciplinary teams in a centre setting. These same standards apply privately as well.

Severe disease can only be surgically treated by excision but there is no consensus on treatment of superficial endo. Laser vaporisation (ablation) is just as effective when done in expert hands - it is about expertise rather than tool but few excision purists accept this.

In terms of costs there really is not way a ball park figure can be applied as it depends entirely on what is involved. For severe endo requiring a full team of 2 advanced lap surgeons, colorectal and maybe urologist, anticipated to take several hours, we are looking at 10K plus.

[dot7 in reply to Lindle]

Hi Lindle,

Completely agree the outcome of scans is reliant on skill and there is a need for more specialised sonographers. But until those skilled people are in place everywhere, I just wanted to highlight to people that even though I saw doctors and had numerous scans in both NHS (specialist endo clinic) and private clinics by very talented careful people, my endo was not visualised on ultrasounds or MRIs, so I wanted to reassure people not to feel crazy when told nothing has been visualised on their scans/MRIs.

I made it clear in my post that although I have been referred to an NHS specialist endo clinic before, I was dismissed by them as the scans were negative, so I chose to see someone else privately, and I think people should feel okay about making that choice for themselves, even if is might not follow the “legal standards”.

I 1000% agree the legal standards should be followed as far as possible to try and get people the diagnosis and treatment they need, but if those routes are blocked or you are dismissed based on scans, I think people should be able to work around them, and not feel like they as the patient are breaking rules somehow my seeking treatment elsewhere.

I agree excision is considered the best method for removal of severe endo, I have had severe endo treated with both diathermy and excision, diathermy might not be the “gold standard” treatment but it seemingly worked well for me.

I think people can feel they are getting subpar treatment because it doesn't fit in with the formal routes/processes they read about, and wanted to provide a lived experience of my scans/treatments for endo, in case it might be of use to someone.

Again my post was my personal experience and wasn’t a guide or a how to.

Thanks

[Lindle in reply to dot7]

The specification prescribed in law only applies to severe endo so all options are open to other stages or diagnostic procedures. But if people have severe endo treated by individual surgeons or with unrecognised teams who don't submit their data to the BSGE database and don't apply recognised standards then there could be significant consequences. Ultimately wherever anyone is treated it is a leap of faith as everyone is different and reviews can be helpful only to a point. If someone does decide to have treatment for severe endo outside of the NHS England treatment specification by just individuals and there are severe complications afterwards then I do feel they should be aware that this was against legislation and know that this is what they are consenting to. Centres don't have to be listed on the BSGE website but they do need to be recognisable as of the equivalent. If opting to have severe endo treated outside of an accredited specialist centre setting there are so many questions to be asked - what are your complications rates, do you work in a recognised multidisciplinary team of endo expert surgeons, do you have a specialist endo nurse, how many severe cases do you do, are your surgeries monitored, what are your provisions for after care, is your data audited? This makes it really hard so the centres are there for a reason. Patient choice should obviously always be at the centre but it is important that it is informed choice and that they know about what to check which most won't.

[dot7 in reply to Lindle]

Agreed, I completed feedback for the NHS clinic and for my private gynae who was lead of that particular endo clinic, and totally agree data collection is very important.

Also agree that having proper procedures in place for complications and multidisciplinary teams for complex cases are important too for all endo sufferers.

I just take issue with the implication in many posts imply, which is that if you have a gynaecologist treat you who isn’t affiliated with an endo clinic then you are automatically getting subpar treatment, or more likely to suffer complications. I have met great & rubbish doctors who were in the specialist endo clinic I went to, and great & rubbish doctors outside of them too. Unfortunately like all medical fields it is pot luck who you get, and I don’t want people feeling that if they aren’t dealing with an endo clinic they are receiving poor care when that isnt always the case.

I am not trying to steer people away from endo clinics, just wanted people to know that isn’t the only place treatment is available to them. Especially if their scans come back not showing anything.

Anyway, scans were the main bulk of my post, and so I hope that people who have negative scans and are demoralised by it, get what they need from it.

Thanks

[Lindle in reply to dot7]

Ultimately I think the take home message is that knowledge is power and there are so many ways now to get reliable info on all things endo-related aside from doctors, and we have the means often to be far more educated than the doctors treating us.

[dot7 in reply to Lindle]

100% agree 🙂

Grateful for groups like this, and people such as yourself that have helped navigate the new rules and regs.

[Endosufferer1]

A petition needs to be made! I've got thoracic endo according to my symptoms (I know what I have, been at the uni, had medicinal modules...). So far, nothing has showed up because scans had been done in hospitals non-specialised for endo and in one of the worst hospitals generally speaking. Taking my chance in a specialised hospital for endo for a thoracic MRI. Will also go privately to ask to get a pelvic + intestinal MRIs. I really want the surgery (endo right now is stopping my life at 99%, you can't do anything when your lungs are being eaten). Hope it's gonna show up; I'll have another appointment with a different specialist for endo (the previous one was a complete jerk and a shame for his profession). I'll ask to get a diagnostic laparoscopy if nothing shows up on scans (hope he will agree to do so), so that he'll be able to know all the specific locations and do a proper surgery by after.

[dot7 in reply to Endosufferer1]

It is very frustrating when you know the issue but the doctors only look at the scan results.

I agree re petition. I see so many people posting on here who are told their scans are clear, and even though their symptoms are debilitating, they are dismissed.

Keeping everything crossed that your MRIs are helpful and show something so you can get the diagnosis/treatment you need. X

[Endosufferer1 in reply to dot7]

Yes, someone who's had negative results on scans + laparoscopy showing deep endo should definitely launch the petition. I'm sure we would get 100,000 people quite easily.

[rb55]

Hit the nail in the head, expertly said. Thank you so much for sharing your story in such detail! You are completely right and this is also my story as it is for so many many of us. Stick your guns girls and do not let anyone make you feel like you don't know your body and mind x

[Banders93]

completely agree. I’ve just been diagnosed with moderate to severe endo after 12 years of trying to get doctors to take me seriously. During those 12 years I also had an ultrasound and just before my lap (paid for privately, out of desperation) I had an MRI that was completely clear.

When I woke up after my lap the consultant said it was ‘just as well’ I pushed for the surgery as my endo badly needed treatment. Validating and frustrating at the same time.

[SweetSparrow]

Thankyou for posting this I have been back and fore thinking it’s all in my head as they didn’t fine anything on MRI or ultrasound! I am currently waiting for a laparoscopy but I’m in pain constantly atm but doctors say I just need to wait for the laparoscopy as they can’t do anything.. 😔