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Pelvic Pain Support Network
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Anyone had a pelvic MRI without needing contrast dye?

Hi,

I've been offered a MRI of my pelvic region on the NHS, but I was told by the receptionist that I would have to have contrast dye injected. I don't want to have the gadolinium dye injected into me because of potential short term and particularly long term side effects...

I'm wondering if I turn up for the MRI but refuse to sign the consent form for the dye, they are likely to do the scan anyway without it. Has anyone had a successful pelvic MRI done without dye? (The MRI has been ordered because I'm suffering recto/anal pain which radiates into my left buttock and the back of my left thigh.)

Thanks in advance for any replies and your experiences regarding this.

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Hi,I would of thought if they feel the dye is nessasary ,they probably would not do it,simply because it won't show up what there looking for. So it would be a waste of time and money,I should think.

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Thanks, Gemini71. That's what I thought too, but I've just heard from a friend of a friend who had a pelvic MRI for symptoms similar to mine and she didn't have to have any dye and the images apparently came out fine, but that was at a different hospital. (Before they put her in the scanner she signed the consent for for the MRI, but refused to sign the consent for the dye.) I think, rather than possibly waste the imaging department's time and my time too, I'll email them about it before making an appointment. (By default I was referred to a private hospital on the NHS, so if I were to turn up for an MRI and then not be able to go ahead with it, goodness how much they would still bill the NHS for my aborted appointment - I suspect probably they'd bill them the full cost of an MRI, so I don't want that to happen.)

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Maybe you could speak with the person who sent you for the scan,or even there Secretary. Good luck. But just try other avenues before cancelling.

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Unfortunately, the consultant I saw said that he didn't know if I could have the MRI without any dye. So, I'm taking your advice not to cancel and have just sent an email to the imaging department with my fingers crossed that they will reply. Thanks for your help.

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Best of luck to you. I've learned over time to exhaust every opportunity until there's no where else to go.🤞

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Thanks, Gemini :)

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For some MRI scans you may need to have an injection of Contrast. This makes certain tissues or blood vessels show up more clearly and in greater detail. Very rarely, contrast can cause unwanted effects.

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Thanks for replying AngieMo. Atm I don't think they know what they're looking for with the scan; they know what my symptoms are, but l believe that they will just be doing a general scan of my pelvic area (from what I could tell from reading the MRI referral form). I surmise that it probably wouldn't be necessary to inject dye unless they see something that might potentially be causing my symptoms or something that looks sinister. (I don't know for sure, of course, but - being the cynic that I am - I wonder whether things are done to patients that don't actually need to be done, purely for the convenience of the medical profession/technicians - For them it's probably easier to stick the dye in patients as a matter of course or at least have you sign a consent form so that they can put a catheter in and inject it in during the scan if they see something that doesn't look right.) I guess I must sound like a bit of an awkward customer but I suffer with ME - amongst other things - and I feel I owe it to myself not to be very cautious about what's put into my body. I'll have to see what they say in reply to my email to the imaging department. (I bet they love 'customers' like me!)

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I am having a scan on Tuesday and yesterday I had to take a capsule which contains 20 markers. It is necessary to have either this or the dye injection to show up clearly any problems which may be missed without it. I had the dye 2 years ago and no after effects. I have a problem with colon and pelvic region.

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Hi Wunseterdam,

Perhaps consider checking that you're not having one of the 'linear' gadolinium dyes (as they're the ones that have been recommended by the European medicines agency to be banned). The EU Medicines Agency recommended the continued use of the 'macrocylic' gadolinium based contrast agents, however, so there is something else they can use. I've explained more about this in my post below in reply to AnonStricture in which I'm not trying to scare monger, but I've done some research and it's just what I've found out...

They've used linear gadolinium dyes for years on the NHS (and they are apparently the best at showing up images clearly) so you might not be concerned about the possible long-term side effects. It's all about weighing up the the pros and cons, possible costs against known benefits and possible benefits, and making an informed choice imo.

Thanks for mentioning about the markers; I'll read up about them - I also have a breast problem and you've jogged my memory that they were at one point mentioned to me..albeit that so far they haven't had to put them in me.

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What side effects are you worried about? I had a contrast MRI and didn’t have any side effects at all.

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Hi AnonSticture,

The contrast dye that they use is gadolinium. There are different types of gadolinium. The EU Medicines Agency has fairly recently recommended that 4 of them be banned because of possible long-term side effects, e.g. they know that deposits of the stuff are left behind in the body particularly in the brain - and gadolinium can cause kidney damage. (Kidney damage though usually only occurs in people who already have kidney trouble.) The more MRIs with gadolinium dye you have, the more likely it is that you could experience long term adverse side effects. (People who have diseases where they go for MRIs regularly, e.g. those with MS who may have regular brain scans, run the biggest risk.) In the USA people there 'class action' suits going on in the courts - people are clubbing together and suing because they claim they have been damaged by gadolinium (chronic muscle pain and fatigue being one of the main problems suffered, I believe). The types of gadoliniums that aren't recommended by the EU Medicines Agency to be banned still have the potential to cause problems, but there's less likelihood of it. (Unfortunately, those gadoliniums are less good at making MRI images clearer though.) The gadoliniums that have been recommend to be banned are 'linear' gandoliniums. Linear gadoliniums are used extensively in the NHS, leastways when I last checked a couple of months ago I couldn't see anything about the NHS stopping using them. It's only my opinion, but I think it speaks volumes that the EU Medicines Agency are willing to recommend banning them altogether and are not saying that it's ok to use those gadoliniums in moderation (considering that the linear gadoliniums are the best for making the images clear) - I also think it indicates that they suspect that even used in moderation they could cause trouble long-term (although I don't think there's actually much evidence of that at present).

Other than that the more immediate possible side effects are typical allergic reaction symptoms such as hives and itchy eyes...though not unpleasant, they are usually dealt with ok by the medical staff...I'm more worried about the long-term side effects, but as I suffer with ME and other health problems, I don't relish having an allergic reaction either.

Sorry, I seem to have written an essay here!..But I think it's important to know the risks and the situation - and I know that these posts get looked at by lots of people.

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Doubt if they would do it without the dye. Ask why you need the dye specifically before you decide. There will be a very good reason for it. I haven't had a pelvic mri at all.

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Thanks, Judi. I'm hoping that my email enquiring about it will garner a conversation with the radiographer and I'll be able to make an informed decision about it.

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Hi,

I’ve had the MRI performed with contrast and had no problems. As there seems to be problems with it being performed repeatedly I wouldn’t worry as it’s highly unlikely you will be having it yearly. Lastly in the U.K. brain scans don’t routinely use contrast - I’ve had 3 MRI and 2 CT scans on my head. They might use them in certain cases but I’ve never been given one even when going for scans to check for a brain tumour. Please don’t listen to horror stories about legal action as it’s important to remember that their symptoms might be explained by something other than having the contrast during a scan. I would personally go for the scan with the dye but maybe arrive early and ask to speak to the radiology team who I’m sure will put your mind at rest. Take care and let us know how you get on

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Hi Alaine1,

Yes, I believe you're right about them not using gadolinium routinely for brain scans. However, a friend of a friend who has MS tells me that they often use it regularly for MS patients to check for the progress of plaques/lesions on the brain so, just as you say, it all depends on the condition being looked at or what they suspect might be present and causing a patient's problem. The gadolinium though does deposit (tiny particles) in the brain (particularly the linear type of gadolinium) even if a MRI scan is done to image other parts of the body - pelvic area, breasts etc. (They used to think that the tiny deposits that remain there are harmless, but now the EU Medicines Agency think differently, especially if a patient has a lot of scans with linear gadolinium as the linear gadolinium deposits more than the non-linear gadolinium does and those tiny deposits build up. Any adverse side effects would be liable to show up sometime in the future and not directly after the scanning.)

You're also right too about the possibility of those taking action in the States may have suffered problems for other reasons and, of course, they are very litigious over there...However, I'm already virtually housebound with ME and Fibromyalgia, so I am cautious as I don't want to unnecessarily add to my troubles in the long term...

I'm not ruling out consenting to gadolinium if they can give me good reason as to why it might be necessary in my case, but personally, having read a lot of data on this, I would only ever be prepared to consent to the non-linear 'macrocylic' types and avoid the linear ones that the EU Medicines Agency have recommended banning completely...For all I know the NHS might have taken heed and switched to them anyway - Hopefully, the imaging department will reply to my email and I'll be able to find out about that.

Sorry if my postings about this seem as if I'm on some sort of crusade about gadolinium contrast; I'm actually not, but I do believe in informed choice, so when I was asked why I don't want contrast dye, I've given my reasons in detail...

So, anyway, I'd like to go back to my original question and ask if anyone has had a successful MRI on their pelvic region, without having had contrast dye, i.e. where the technicians and their specialist has been happy with the images. I'd be grateful to hear if you have. (My MRI has been ordered because I'm suffering recto/anal pain which radiates into my left buttock and the back of my left thigh.)

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I just want to say don’t have the dye if you don’t want it. I had an MRI with dye for a throat problem. I signed the consent form for the dye without too much concern but did ask what the chances of any problem with it were. I can’t remember now how many people in 1000 were affected but later my husband said it seemed like a high percentage to him.

Anyway I had the dye but during the scan the scanner broke down and they they sent me still with cannula in my arm to wait for another scanner, then moved me again. During the 2nd scan they injected the dye, everything seemed fine but one day later I had shooting pains down my arm (where they had injected the dye) into my hand and a burning sensation and for several hours could hardly move my hand at all. To cut a very long story short, I went to my GP and I called the MRI department. GP said one thing then another, the MRI dept didn’t seem to want to know but eventually vaguely suggested that my arm problem might ( but would not say for sure, obviously to avoid any liability) have been a result of extravasation (where the dye had leaked into tissues instead of staying in the vein). But everyone closed ranks and would not investigate this further. I was given pain killers, sent to a pain management clinic, physio, and acupuncture therapy for a couple of years. I never received a diagnosis for the problem. I also went to see an osteopath. Her treatment helped a lot and after about 2/3 years in which I spent hundreds of £’s and after several flare ups/ relapses I got better. I felt extremely lucky and the osteopath had used many different techniques to work with the tissues in my arm.

During this time I looked up all the information on gadolinium dye both it’s acknowledged problems and law suits re kidney damage and Nephrogenic systemic fibrosis, but also symptoms of people who didn’t suffer kidney problems but suffered muscular problems such as mine. They have immense problems being recognised by the medical community and there seems to be a refusal to acknowledge all but the most severe kidney problems associated with gadolinium dye. Although I am lucky to have recovered use of my arm ( for a long time I couldn’t use it without pain and I had even trained myself to be left handed), I am watchful for any other symptoms as the dye can have effects many years later.

Since then I needed another MRI for my throat problem but this time I refused the dye - it was a different hospital from the first but they were fine with me refusing the dye and said they could see the scan clearly so no problem. I just refused to sign the consent form when I got to the scanning dept.

From my experience I would say, don’t have the dye unless you are sure you want to take the chance and sure that the benefit outweighs the risk. From a quick look around on google I can see that there is a lot more becoming known and recognised about gadolinium toxicity, not just NSF, more than when I had the dye several years ago. For me this indicates there is a very real problem with the use of the dye, whether it is openly acknowledged by the medical community or not and I would advise anyone to be cautious.

Good luck and best wishes.

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Hi Beezwax

Thank you so much for replying and telling me about your experience with gadolinium.

I'm pleased to hear that you are ok now, but what a time you had suffering such pain and disability for so long, all the time not knowing whether things would eventually improve for you or not. I obviously hope that you won't experience any further problems as a result of the gadolinium.

There is so much pressure put on patients to conform and not be a bother. The medical profession (more than) tend to make light of any potential adverse side effects of tests and treatment and then, when you do experience them, they close ranks - just as they did with you.

My referral for an MRI was done by a colorectal surgeon who at first wanted me to have a CT scan with contrast dye (which would have been iodine based and - from what I have read - has even greater potential for causing adverse side effects than gadolinium does, both in the short term and long term). Already knowing that CT scans on the pelvis give you the equivalent to 3 years' worth of background radiation all in one go, I managed to duck out of having one. I told the colorectal surgeon that I didn't want the radiation and I also didn't want iodine dye injected into my body because I have thyroid disease. With regard to the latter he declared that it was 'utter nonsense' that iodine dye is contra-indicated in thyroid conditions, but offered an MRI instead when I asked about one. He said that he didn't know whether I would need contrast dye or not with an MRI and 'helpfully' told me to make my own enquiries with the imaging department. (I now kind of wish that I'd asked about having an ultrasound instead, although I appreciate an ultrasound scan might not give enough detail.)

My situation is a bit of a difficult one as I want the MRI done (without the dye) but I don't really want to go back to the colorectal surgeon who ordered it in order to get the results. I'll spare you all the details, except to say that the colorectal surgeon was extremely unpleasant and performed a flexi sigmoidoscopy on me without my consent. (All he told me that he was going to do was put a lubed, gloved finger up my bottom and before I knew it a camera was put up there.) I've since learned that the flexi sigmoidoscopy was done without the proper preparation before hand - an enema evacuation of the lower sigmoid colon, rectum and anus should have been done to be able see the those areas clearly without the poo being in the way. (There was a chaperone nurse there at the time, but she wasn't present at my consultation leading up to the examination.)

If they'll do the MRI without the gadolinium, my plan is to afterwards try to obtain a copy of the MRI and the associated radiologist's report, and then ask my GP to refer me to someone else, advising my GP that I am considering complaining to the local Health Care Commissioning Group about the colorectal surgeon doing a flexi sigmoidoscopy without my consent and without the proper preparation beforehand.

This morning - with the pain in my backside being as horrendous as ever - I started to think that I might give in and consent to the gadolinium if I were to be told they won't do an MRI without one (as I'd managed to find out that they use the supposedly 'safer' non-linear gadolinium at that particular hospital). However - thanks to your input - I am going to stick to my guns and refuse any type of gadolinium dye.

Kind wishes and many thanks for taking the time and trouble to reply to me; I'm very grateful to you.

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Hi i have had several MRI scans of my pelvis but I didn’t need a dye you can always ask for CT scan to give a clearer picture, as happened in my case . Good luck

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Hi k_J53, Thanks for replying - It gives me hope that I too won't need a dye. Cheers :)

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I think it is worth the risk to have the dye. It gives drs a way better picture. I’ve had several CT’S with contrast with no after effects. They just have to tell you about the side effects for liability reasons. The percentage of people who have problems is very, very low. Hope this helps you. N

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Thanks for your reply, airplane. However, I'm concerned about the kind of contrast dye that they give you for MRI scans, i.e. gadolinium. The dye that they use with CT scans is different, it's an iodine dye. With iodine contrast dyes used for CT scans there is apparently far less risk of long-term adverse side effects than with gadolinium dye.

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One can have an MRI without contrast dye. It depends upon the detail of what your Dr is looking for. I know this, though. When I refused when I was in the hospital, the radiology dept sent 3 different techs to my room to try to talk me into it. I was refusing because I have stage 3 Cbd and contrast dye is harder on kidneys. The last one I had I needed a lot of detail, so I consented. But I was given a minimum dose. Also before, I had a blood test done to check my kidneys function levels

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Hi Chica1943. It's helpful to know that it can be done without dye as I'm still going to try to have it done without it. A friend of a friend has recently had an MRI done on her back and pelvis and they apparently used a fairly heavy pad type thing that they placed over her which they said would help make the images clearer - I have no idea how it works, but perhaps such a thing will be appropriate for me too. (The consultant I saw told me that he had no idea what's causing my anorectal pain and said that he thought an MRI probably wouldn't show up anything, so I don't know how much detail he would have asked for...Hopefully though, whatever's causing the problem will show up without the contrast.) Good idea about having the blood test beforehand. Many thanks for your reply.

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I just thought I'd update this thread that I started. I've just had the MRI on my pelvic area. (It's taken a long time to get one as I had to get re-referred to another colorectal surgeon as I had cause for complaint about the first colorectal surgeon I saw.) Anyway, I had the MRI on my pelvic area without any dye being injected. The radiographer just put a big and fairly heavy mat over me (which covered me from under my boobs down to the tops of my thighs) which apparently helps to make the images clearer. (When I was under the care of the first colorectal surgeon that I saw, I was told that I would need contrast dye, but under the second colorectal surgeon's care, when I went for the scan I wasn't even asked to have any contrast dye.) I am currently waiting for the results of the scan. Here's hoping that the images will have come out clear enough and I won't be asked to have another scan done with dye...If they do want me to have another with dye, I'll post up about it.

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