I have a suspected endo and my gynaecologist said that they will do an MRI scan first. When I ask whether a scan will show everything (as I know lap is THE ONLY way to confirm endo!) - he said that it will show more than a lap as lap will only show things on the surface and scan will also show things within organs.
I’m so confused now! I read everywhere that a scan is a waste of time so I have no idea what he wants to send me there first
Of course I couldn’t argue with him but I feel now that I just saw a wrong person...
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MaggieBluee
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I can't give you any information as to which is most effective or which could help diagnose better because i'm not sure but when I was getting diagnosed they sent me for an MRI first and found I also have Medulary Sponge kidney disease which was previously undiagnosed.
I then went on to have a lap and was diagnosed with endo, but I would say if they are willing to give you scans take them, as it's always best to have extra tests which might find things otherwise missed.
I know the endless tests are a nightmare when you just want to get a diagnosis and move forward wth treatment, but hang in there, you can get through this! I wouldn't neccessarily doubt your doctor either, just think of him as being thorough, if you're still unhappy with his treatment after the scan you can always get a different opinion.
Hi Ajay, thank you very much, that’s a really good advice! You’re very right saying that sometiems we just need to be patient and have faith in our doctors. Luckily the waiting time for the scan is not long at all so by end of May I should hopefully have more information!
I have had many ultrasound scans of my pelvis as well as 4 laps over the past 12 years. I am 43 now and waiting for a hyst. For the first time my consultant has booked an MRI scan for me before the op. I said to him, why haven't I had this before with all the ultrasound scans I've had and he said because he wants to 'have a deeper look' this time. This is an endo specialist in a BSGE centre. So I take it the only way to see behind and within organs and go deeper is by an MRI scans as you can't cut organs open to see within them and difficult + highly risky to lift them up to see behind them during a lap. I think it is good they are offering you this at this early stage as I have gone many years not knowing the true extent of my endo. I wish you all the best!
Actually I was sent for a lap before an MRI and it turned out the MRI revealed a lot more than the lap...e.g. the MRI revealed I have an endometrioma on my left ovary which wasn't visible during the lap, apparently I have a nodule in my vagina, again not seen during the lap, etc., etc.. The main problem is that if you have a lot of endo your adhesions cause areas inside to become 'obliterated' so that the surgeon can't see clearly how badly organs are being affected..everything is covered in opaque 'film', whereas, as your consultant said, it's possible from an MRI to see 'inside' organs.
To be honest when I realised this, I was pretty angry that I'd been put through the lap first (which wasn't a good experience for me AT ALL), when I could have just had the MRI which would have confirmed the extent of the endo without having to have such an invasive procedure where no endo was removed. The surgery literally took me months to get over (in fact quite honestly I still don't feel 100% over the op even 7 months later).
So, if I were you, I'd definitely take the chance to have the MRI first...if endo is found, and it's decided you need surgery, then you could have the one lap to treat the disease, rather than enduring at least 2 laps - the first diagnostic and the second to treat what's been found. Honestly, the fewer times you have invasive surgery, the better - surgery can also create endo adhesions which may make everything worse.
Thank is so helpful, thank you!! A few more girls said the same thing and the more I read about it, the more I realise that’s a good way to do! I does make sense now and you’re totally right that is need at least 2 laps anyway, so it’s best so have a scan first to see how things are down there!
Thank you again and all the best to you! Really hope you start feeling better soon! X
You're more than welcome...there's so much to take in when you're first diagnosed with suspected endo and it's so difficult to get the full picture! This website has helped me so much in terms of knowing what to expect having read other women's stories and I'd like to thank everyone again for sharing their experiences 😊😊!!
Anyway, yes, in answer to your question, if the MRI shows nothing, then I'm sure you could ask for further scans or a lap if necessary. Your gynae certainly seems to think endo is a very strong possibility, otherwise he wouldn't be ordering the MRI - they actually cost quite a bit of money, so I'm sure he wouldn't just arrange one for you if he didn't think it was necessary.
You could also ask for a contrast dye injection - this shows up certain tissue more clearly (I've read some women didn't have the dye injection initially in their first MRI and nothing was detected, but when they had a second MRI with the dye, suddenly the endo tissue became clear).
By the way, did your gynae give you an internal manual examination? My endo was found pretty much straightaway when my consultant had a feel around (it was a pretty horrible experience, but anyway, that's one way to get an instant diagnosis!!!!). One other thing to check - is your gynae an endo specialist and does he work in a BSGE Centre? I've heard a lot from other women that general gynaes don't always know what to look for and may miss obvious endo symptoms. Even in the BSGE Centre where I was seen I was initially told that the 'mass' in my abdomen that was detected via the MRI scan looked like it might be cancerous...this was according to the report written by the radiologist. However, when my consultant read through the report with me, he told me that in fact it was 'clearly' a mass of endo tissue and apologised for the scare...he said that to someone who wasn't an endo specialist the endo tissue might well be misinterpreted as something else.
Anyway, yes, onwards and upwards!!! I do hope your MRI goes well and hope you then get speedy treatment for your symptoms.
Great tip about the dye injection, thank you! Do you know when I can ask for it? Should I call the hospital once I get the date or shall I ask on the day of the scan?
Yes, he did do a manual examination and couldn't feel anything. BUT he isn't an endo specialist just a general gynae.
That's so awful that you were given such results when in fact it was 'just' an endo!! It does show how important it is to be seen by a specialist....
Hope you're having a lovely sunny morning and feeling well today!
Yes, good question, it might be a good idea to phone the hospital once you get the date (they usually provide a phone number for the MRI unit) and ask if it's possible for them to give you the contrast dye injection just to make sure they know you'd like this beforehand.
And yes, it was a bit of a shock to be told my tissue looked 'suspicious' - they referred to it as 'neoplasia' which appears to be medical-speak for cancer...wish they'd just call a spade a spade - it's not exactly helpful for us poor non-medically-qualified mortals to be confronted with a whole load of incomprehensible medical jargon 😵!!
Yes, do push to see an endo specialist if you possibly can...you don't want a general gynae to hold back your treatment (it can happen, unfortunately).
Wishing you all the very best going forward and let me know how you get on!! XX
Hello again! Sorry for late reply, I was enjoying the weather! Hope you did too!
Yes, I will certainly call the hospital once I have a date and will ask about the dye.
I’m having some blood tests this week in regards to fertility issues (have been ttc for over 2 years), so finally things are moveing forward... I’m very impatient!
Has all of your endo been removed during the lap? X
Yes, the weather was gorgeous yesterday, wasn't it?
Oh good, yes, no harm in phoning the hosp and asking for the dye - it's better to give the consultant the clearest possible images and at least you won't be left wondering whether the MRI wasn't able to pick everything up.
Best of luck with the blood tests this week - hope you can conceive soon!!
No, in answer to your question the only thing that was removed during my lap was an endometrial polyp...so it felt like I went through all that pain and unpleasantness for nothing: all pain and no gain!!!
Since I had the lap and MRI I've been told that I need a total abdominal hysterectomy (basically all the reproductive organs removed...uterus, cervix, ovaries, fallopian tubes..). I've also been told by 2 colo-rectal specialists that since I have a large recto-vaginal nodule which is invading the bowel wall it looks likely that I'll need a bowel resection. There are many, many risks attached to this kind of surgery, apparently. In addition, part of the nodule is embedded in the vagina, so I'll need some kind of surgery there too. So, altogether not looking at all good!!!
I'm not happy at all to hear how badly my disease has progressed given that I've been going to see various GPs and even a bowel specialist for YEARS about my symptoms...they started to affect my life in 2000 and yet every time I sought help I felt that I was just being treated like a time-waster.
Anyway, I've decided that for the time being I'm going to try and 'treat' myself with diet and supplements. There's just no way I want to put myself through such drastic surgery...and as I said, just having the diagnostic lap was more than enough for me!! At the moment I have a very low opinion of the medical profession as a whole.
I do feel a lot, lot better physically and emotionally now...I feel so much more 'in control' of my situation and I'm convinced that what I'm doing at the moment is the best thing I can do given the circumstances.
Anyway, do take care of yourself in the meantime. Wishing you the very best of luck going forward with the plans to conceive and also with treatment for the dreaded endo. Take good care of yourself, XX
I’ve cancelled my blood tests in the end as a few people have told me that endo could give wrong results for what I need to check. So I decided to what until I know what’s happening with endo.
That’s awful! You’ve been through so much for so long! I’m really sorry you have been waiting so long... and I don’t blame you at all that that you’ve lost trust in the medical profession...! Sounds like you’re going through a lot! I really hope you manage to stay strong and positive, as much as you can! And that you have people around you to support you!
I don’t know if you’ve ever considered it but I’d recommend acupuncture for relaxation and pain management... I’ve been doing it for about 5 months now and have noticed some improvements! As you say, diet can help too! It’s so sad that endo can’t be cured and that we all have to find our own ways to deal with it and learn to live with it...
I truly wish you all the best and that you too find your way to live with endo! Take care of yourself! X
What a kind reply - thanks so much for your sympathy and concern! Yes, when I was finally diagnosed I went through quite a long period of feeling very, very low, but I feel a lot stronger emotionally now that I've decided not to seek any further medical treatment.
Yes, you're right, unfortunately we all have to try our best to find our own ways of dealing with the condition and it's not always easy. I'm so pleased acupuncture is working for you. Good to have such a positive recommendation. Certainly for me diet and supplements have been key to me finally feeling I've turned a corner and am making some progress in the right direction. Onwards and upwards!!
Sorry to hear that the blood tests won't necessarily give the right results. I do hope all will go well in your attempts to conceive.
Thanks so much for your lovely reply...and take good care of yourself too! XX
Like others, I was told it helps show up the endo patches.
My understanding is that MRI is a relatively new way to investigate endo (previously it was just laps). MRI scanners are also expensive and the NHS doesn’t have enough of them, which is why appointments are often at funny times. So I think you are getting good treatment if you are being offered one.
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You’re very right saying that sometiems we just need to be patient and have faith in our doctors. Luckily the waiting time for the scan is not long at all so by end of May I should hopefully have more information! 
Mri found nothing 
Does endo show up on MRI?
MRI for diaphragm endometriosis 
MRI
MRI results clear
