Hi there ladies.I've finally got put on somebodies list for an mri. I'm paying private so I was surprised when I wasn't given the choice of a date. They just phoned me, apologised there had been confusion trying to reach me, but she didn't say how long. I suspect 3 weeks because the Dr's reception have been phoning me and telling me I need to pick up a letter and make a new appointment but didn't specify who or what for. And when I phoned they said your doctors not in today.
But the lady on the phone doing the questions for my mri said the radiologist is going to image 3 areas at a cost of £1100 which is fine but I'm wondering if any of you were told this? Is it because the pelvis is so big its classed as 3 areas? Its to speed things up as I've been on the gynae list and discharged and re added over the 2 years and my ability to work is decreasing as my Depo Provera is not lasting as long as it should. Thanks for your help.
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Thanks for this. Could you tell me what tips you've got for being comfortable? Am I allowed a pillow under my knees? I watched an nhs video on mri but they put her in backwards feet first not her head. That's kind of what I was hoping for. But every other video your heads inside with a darth vadar mask on. Do they make you wear a covid mask aswell? Sorry for all the questions. The lady on the phone was as much help as a chocolate teapot.❤️
Hi there, I had a pelvic MRI last month and I went in feet first. I didn't need to wear a mask but I am in England so it might be different rules for Scotland. I didn't go in far enough to only see the machine so didn't get claustrophobic if that makes sense. I'm sorry you are having such a hard time and I don't know if they scanned just my pelvis or not as it was an NHS gynaecologist. I really hope you get some answers soon 🤞 xx
Hope you are well. Specifically ask what 3 areas? The pelvis is one area but I've had with and without contrast. I have also had spinal due to other signs e.g. sciatic during period. The Mri is also done in context of your medical history e.g. in my case checking for deep infiltrating endometresiosis and nueropelvic signs ( told the gynae that requested it after severe stage on lap, I had pain defecating, constipation, altered nerve sensation to bladder, sciatic signs etc).
Depends on the context of why you are getting the mri. Make sure you say your full symptoms etc even if you think trivial ( particularly also bowel, urinary , neuropelvic) because this is taking into account when interpreted. In most cases the mri is requested by gynae or your doctor with this info.
Remember for superficial endo this may not be seen on mri but nodules, larger deposits of endo and importantly rectovaginal involvement can be assessed. In my case also suspected adenomyosis on the mri. A normal mri doesn't rule out endo if you are using this for diagnostics.
Also be mindful who interprets it should have experience in looking for endo/ pelvic disease etc. The one I had at the hospital was an advanced imager for oncology of the pelvis etc and for the complex endo cases too.
Thanks for replying. I did ask on the phone what specific areas and she didn't know. I've been rebuffed every single time I've emailed and phoned all 3 hospitals I contacted for information. My previous post was about finding a radiologist who does read mri for endometriosis. I was kindly sent an address for Surrey by one lady. But I'm in Scotland. I sent a specific request to radiology in Rosshall Glasgow (I think that's how it's spelled) and they sent it back to reception, who very rudely emailed my back that my question needed to be answered by radiology and that was that from Glasgow.
What you've said about the pelvis being one area is worrying then. I know I have nerve involvement because I lose the feeling in my feet as my Depo wears off and going to the toilet is a nightmare. Im now carrying spare underwear around in my bag and seriously would like to find something more like a tampon for my bottom like a cotton butplug. I remember all the agony as a teenager off shooting pains unable to walk. I don't think any of that is in my notes. It's certainly not in my letters addressed to me. The Dr's have all very carefully said to me yes it's endometriosis when I was a teen, and left it out my letters, focusing on the treatment plan agreed.
I know now when I want my letters between my Dr's to read I ask for the docman files.
Have you any idea what I ask for to see what the radiologist has ordered?
Thanks again for your detailed response. I'm just not sure how to get the information as nobody will talk to me.
I am so sorry to hear that you are going through this. But certainly you'd suspect one mri of the pelvis sufficiently covers for endo thus you may need to call them back for clarity. I had the contrast regarding the nueropelvic signs. As a private patient you should know what you are paying for and they should be able to give you that information freely.
So in terms of finding out what is requested for the mri that is more complex. I actually found out after mine was done although D.I.E and my lap findings had been informed the doctor hadnt mentioned the neuropelvic signs when I got my report back. I contacted the mri department separately ending up speaking to one of the management there who was able to request it as an addendum.
Maybe actually see if they have a direct line for the mri department and ask specifically what 3 areas, and what has been requested etc? And ask if it is by/ interpreted by an endo specialist ( or ask the name and have a Google!). If they say they don't know then ask for someone who knows this and if you can speak to them directly. I personally wouldn't pay unless I knew what I was signing up for. Even if it means looking again unfortunately.
Also sorry I don't know about Scotland but an option would be see if you can find an endo specialist privately get a case review then they can request the mri etc directly? I know it feels rubbish having to see more doctors I had been misdiagnosed and gaslighted to an extent unfortunately my trust was low. But if you list all symptoms, bring symptoms diary etc they can hopefully start actual investigations.
Or look for any specific endometresiosis private centres in Scotland ( for example theres one in London I had considered prior). Long story short I found the endo specialist for this region - who is nhs and private. I booked to see him privately which seems to speed up the process. Plus what was found on my mri put me on his nhs list for mdt surgery etc.
No the pelvis is just one area and that is all you need really. This should show any rectovaginal endo and that is what we are concerned with and what will get you referred to an endo centre if deep disease is found - unless there is another specific area your doctors are concerned about. There is specific protocol to use when doing the scan to look for deep endo so it needs to be done by a specialist radiographer/radiologist in that area and then read by a radiologist with the required expertise in deep endo. You could end up paying £1100 for scans you don't need and by someone who isn't trained to look for deep endo on the pelvic one unless it is really severe and had significantly distorted anatomy. Note that contrast isn't required.
You might be as well to have an advanced transvaginal ultrasound by someone specialised in deep endo imaging. Where are you located?
Are you already diagnosed and if so do you know what stage/severity?
Hi Lindle. I can't have a transvaginal scans as I've got a history of rape and sexual assault and I can't get anything in there. I've been refused to be put under for transvaginal as well. I'm in Scotland. The bsge centre won't speak to me in Edinburgh.
I was told I had endometriosis when I 18 or 19 but it's been kept out of my letters until June 2022 when the gynae confirmed my Depo could be upped to help my symptoms. I'd been on the list for a laporoscopy the year before, but was removed and discharged without telling me. The gynae then saw me again 6 months after I phoned in total distress after a 3 month bleed and agony unable to work and recommended surgery AGAIN. I told her I was moving out the area the next day. She kindly took all my notes and scanned them straight to my Dr who did nothing with them. My new Dr even tried to stop me taking the Depo 'so she could see what would happen'
I've tried contacting the hospitals myself.
I have struggled with my breathing and pain right up in my diagram that's been xrayed and I've had asthma and copd checks. I think it's endo related, and I think that might be what one of the areas is.
I'm hoping that this mri at the very least will give me a scan to take into hospital on the NHS if or when I get back on that path.
That might be why they are looking at the chest area, so maybe it will be pelvic, abdominal and chest. I guess it will be as well to pay to have as much done as you can afford but just be sure the appropriate endo protocol is used.
Hi everyone. I hope this reaches you all and you are as well as can be. Thank you to everyone that has responded. I feel so much gratitude. I've now had a copy of my referral letter. I've been in touch with the company organising the scan. They then came back to me today and explained that a much more detailed referral was sent with all my notes to the radiographer and the radiographer has agreed to take the case because they do know they can do it properly. Or they would have declined the case. This is why Glasgow rebuffed me.
It also turns out the scan is being done in the hospital where I am 'waiting' on the NHS list. I did wonder when I first read the clinicains bio for this company if I'd be treated in the same hospital. He also works for the NHS in that hospital.
I find it really sad I've been gaslighted and told its all in my head and that vaginismus is the cause of my diarrhoea and blood clots and back pain and inability to walk and my fatigue. And yet here I am one week away from an mri taken on the referral that says 'yip, your symptoms match. We can help. We can see you next week'
And I need to put this on here. I was going to rant about pathways to care having now met another woman refused care because she has vagismus. But that's another war for another day. 😕 I don't know how you fix a biased system towards women.
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