can I ask consultant for MRI scan

[Littlebug77]

I've not spoke to my consultant in over a year my symptoms have monotony improved but stil waiting to hear if I'm eligible for laparoscopic procedure.

because I don't have a confirmed diagnosis can I just ask him to refer me for an MRI scan

[Spanielsally19]

I was actually told by a lady today her endometriosis was diagnosed firstly though an MRI scan and the she went on to have a laparoscopy but I was told by my gynae doctor yesterday they won’t do an MRI for me before a laparoscopy in order to diagnose. Check with your doctor as different hospitals may have different ways of doing things. Hope you get the answers you’re looking for!

[Littlebug77 in reply to Spanielsally19]

thank you for your reply I appreciate it

[Mustang2598]

Morning. Endo often doesn’t show up on an MRI. Because of that, I believe a lap is the usual way to diagnose. I was lucky as I had surgery to remove a cyst and it was then I was diagnosed. Id be tempted to find email for the consultants secretary and try finding out what’s happening currently. If they are going to do a lap that’s a much better way of getting a diagnosis than an mri. You could have an mri and them not see anything which could make things harder for you re diagnosis.

[Littlebug77 in reply to Mustang2598]

thank you for your reply I feel so helpless I've been waiting for a while for my operation and my consultant doesn't reply to me

[Avourneen in reply to Mustang2598]

Mustang this is just not true. Thousands of women on this site have been diagnosed by MRI saying endo can't be diagnosed by a scan was truw 20 years ago and isn't now. I had my endo diagnose dby MRI and the surgeon said it was vital to get the endo scanned and that no reputable surgeon would operayet without having dne an MRI because they might miss patches without the MRI and forexample adenomysios is frequently missed on laparoscopy but can be seen much better on an MRI.

I am not saying that scans are 100 percent always able to pick it up but if you have a scan done by a properly qualified sonographer who has experience in scans for endo it is highly unlikely that it would be missed , the problem is that some doctors who aren't specialists also send patients to sonographers who don't know how to read the scans for endo.

It sounds like your consultant isn't very good. iS he/she and endo specialist or a general gynae?

On my first op I was a general gyane who did a lap without a scan, he missed about 75 percent of the endo, for the next op I had a specialist surgeon and he sent me for an MRI and then did the op taking out almost all of it but he said the first surgeon had left me very badly scarred inside as well as missing most of the endo.

If I were you Iwould go and get a good quality scan privately, I would read up about your consultant and see if they seem like thy have a lot of endo experience and if he/she doesn't id ask if you can change surgeon.

Good luck

[Bluegirrl in reply to Avourneen]

Obviously there's a huge difference between an endo experienced radiologist and a general one and it's true, experienced radiologists could pick up most cases of endo on MRI. But it's not a "20 year old" fact that superficial endo or stage one endo is still easily missed on MRI even by experts. It is clearly stated in the most recent NICE guidelines on endometriosis. Gold standard for diagnosis remains laparoscopy. Link: cks.nice.org.uk/topics/endo....

I wouldn't say "it's highly unlikely it would be missed by experts", I think it's more accurate to say that you likely won't have advanced or deep infiltrating endo if MRI is read normal by experts. However, early stage/superficial endo would still be possible.

[Avourneen in reply to Bluegirrl]

Hi,

Yes I think that is a fair point although scanning techniques and quality have improved very much in the last 20 years. It just annoys me when people are repeatdly told that having a scan is complete waste of time and that it won't pick up anything. It is true that scans can miss endo sometimes but they are far from a waste of time and I have seen about 5 different endo specialist and they have all insisted that a good scan is vital to getting the best results from a lap. My endo showed up on every scan I have had, and had I been sent for a scan earlier I might have been diagnosed before the disease gt really bad.

If MRIs and TV ultrasounds were a waste of time surgeons wouldn't suggest them.The difference in the quality of these scans is huge though, and mosty this is down to the sonographer and how much knowledge of reading scans with endo they have.

Everyone's symptoms are different I thought I probably didn't have endo as I had read lots about heavy periods and I didn't have that I just had terrible pain form when my periods started at 17 at first the terrible pain was nly in my abdomen and only when I had my period but then it spread and caused loads of back pain too and I ended up in pain every day. But I think lots of really bad pain every time you have your period is a good indicator, for example I often couldn't stand up and had to take time off work.

But if you are bleeding three weeks a month that must be exhausting and something is clearly not right. Get a scan done and it should show up what the problem is then find a more caring consultant. Good luck

[Mustang2598 in reply to Avourneen]

where did I say having a scan was a complete waste of time? Where did I say it wouldn’t pick up anything? I suggest you read nice guideline 73. Yes, scans can be used, but a lap is the best diagnostic technique as endo doesn’t always show up on an mri!!

[Avourneen in reply to Mustang2598]

You said doesn't often show anything, despite having your own endo seen on a scan.

Scans do generally show up endo but can miss very mild endo and they are really helpful for getting a good diagnosis and effective surgery. I just don't want someone who has endo put off form getting a scan and proper diagnosis. I probably reacted too strongly and I apologise,because I see this idea spread a lot on this website, that scans don't pick up endo. But if they didn't surgeons wouldn't recommend them and having had my own endo picked up far better on scan than on a lap I know that a lot is down to the skill of the sonographer and the skill of the surgeon. It would be unusual for a reputable surgon to go straight to a lap without getting someone scanned, this is because it can really help to not miss large areas or patches of endo.

I just don't want other endo sufferers to miss out on a proper diagnosis or treatment, (it is very hard to get both anyway )because of this myth that endo never shows up on scans. As you explain yourself when you had a general sonographer look they didn't see as much as a specialist who deals in endo. It's important to find a surgeon and a sonographer who have experience with endo.

[Mustang2598 in reply to Avourneen]

I appreciate your apology. It initially sounded like you were saying I was lying in some way and spreading misinformation. I may have overreacted myself so apologise for that. I specifically used the words doesn’t often rather than never specifically. The guidelines are very clear that an mri isn’t the preferred diagnosis option and don’t say it’s not endo because it’s not on the scan. Scans can be useful in conjunction with a Lao but shouldn’t negate a lap. The poster is awaiting a lap. I didn’t want her to replace a lap with an mri as if it didn’t show up on the lap she may get told it’s not endo and not have the lap. In the past mine hasn’t shown up on scans. This time it’s only really shown scar tissue and some evidence of its presence. It’s only when the endo specialist has viewed the scan that they’ve agreed it’s on my bowel.

[Avourneen in reply to Mustang2598]

It’s all very emotive and our views are coloured by our own experiences. There is quite a lot of evidence that laps often miss DIE endo that MRI picks up, but I expect this is down to the skills of the surgeon. I don’t think the NICE guidelines have reflected all this new evidence yet and I think it is specific to DIE. For example if the endo is own the bowel a less experienced surgeon could miss that at laparoscopy when an MRI would pick it up well. I think the two things are needed.

Also when we read something written we don’t have the nuances we would if we were speaking and what we write can be interpreted differently that what we actually meant so it is easy to create or receive the wrong impression. I am sorry for jumping down your throat.

I just really wish we could all have access to gynaecologists who knew about endo.Also GPs, apparently GPS spend about 1 hour of their training on endo. Many gynaecologists have very out of date knowledge and are still going around perpetuating myths like if you get pregnant it will cure the endo, you can’t have endo after menopause, and others over promise and claim excision will completely cure endo. It is a minefield trying to get the right treatment and even to be taken seriously. Almost every woman I’ve interacted with on here has been fobbed off and told they have IBS and not endo for years.

1 in 10 women have endo so this poor level of treatment is just unacceptable.

I guess we are both just trying to help the poster but have different views stemming from our own experiences and that is fair. I think at least the poster can get better advice form here than from GPs which is sad.

Here is an up to date study about how DIE and Adenomyosis is is frequently missed on laparoscopies by inexperienced surgeons because it isn’t easy to see. I think getting a scan first is a good idea and this does chime with the latest scientific research, but so much depends on the surgeon being an endo specialist rather than a general gynae.

Have a read and see what you think….

ncbi.nlm.nih.gov/pmc/articl...

[Mustang2598 in reply to Avourneen]

I agree a scan first would be good and definitely not harmful. I just wouldn’t want the poster to miss out on a lap and just have an mri.

[Bluegirrl in reply to Avourneen]

These emotions are unfortunately the result of a lack of understanding of the disease and appalling dismissal of the medical community due to the under researched state of this disease. It is so frustrating and enraging that very little has changed in the last decades in terms of diagnostics and treatment.

I think the issue that many patients encounter is that if they get negative imaging, then they're denied a lap, because more often you come across inexperienced concultants on the NHS. This is why it's important to stress that diagnosis shouldn't be based on imaging alone.

Then of course, I agree with you on the fact that imaging is also really important to plan for surgery and every reputable endo surgeon should do imagining to plan for lap. We just need to remember that diagnosis is tricky and should take into account clinical signs, imaging if positive and lap all together. I really hope things will get easier in the future.

[Avourneen in reply to Bluegirrl]

That's very true I really think everyone needs both . If you read the study there are also lot sof cases of false negatives even fater laparoscopies where people are told they are clear, when they are not. My first surgeon told me I had stage 2 endo very mild but when I saw an actual endo specialist a few months later and had a scan it was stage four and right through the bowel. The previous surgeon missed it as he went straight to a lap with no scan and he clearly wasn't an endo specialist.

It is a minefield.

What we need is more research so surgeons, sonographers and doctors can understand more and have a better idea of what causes endo and how to treat it. The really huge thing taht would make a big difference too is if doctors listened to their patients and took them seriously. In the mean time all we can do is really push and make a fuss to get proper treatment and diagnosis.

[Mustang2598 in reply to Avourneen]

What I said is true though. As in my case. An MRI can show it, but it’s “often” not visible. In my case, there was evidence of scarring on the mri when viewed by a general radiologist, but it was only seen properly by an endometriosis specialist radiologist. Even then, they can’t see all of it. A lap is still the main way to diagnose endo. Nice guideline 73 explains all of this if you want to have a look.

[Jaylou26]

Hi i had a MRI before my laparoscopy 2 years ago and it did show endo, i'm due to have another laparoscopy later this year so hoping he will arrange another MRI before.

I've been told they only usually do MRI if they suspect deep, bladder or bowel involvement.

[Littlebug77 in reply to Jaylou26]

what symptoms would I be looking for everyone I pee or have bowel movement I'm bleeding . Honestly I bleed 3 weeks a month