Request a copy of the report, all your records if you want a nose, at least you can see what’s said.Hardly anything showed on mine, we know scans are being used these days as a confirmation of diagnosis not as a part.
Chat with GP, about the kidney stone with referral (could easily be a source of pain) and that you’ve had cysts drained before. Is fertility a concern? If so include that with GP and referral to a decent Gynae who covers that and Endo.
Can you go back to surgeon who had previously helped?
🤞 for a decent phone call 🙂 let us know how it goes.
I had a similar experience with an MRI I paid for privately with a BSGE specialist.
First of all results never appeared at my follow-up so I had to wait for a quick call instead so I didn't have to pay to see the specialist again. He then called and told me all fine, no sign of deep endo (as was suspected) so just to call his private office if I decide I want to pay for a laproscopy. I can't afford this as I moved house and got married this year. In mean time, GP advised I've to continue on Dienogest and Cerrelle combo and wait for NHS gynaecology appointment. It was very, very dismissive.
I then received a copy of the report in the post which says I have numerous follicular cysts on both ovaries (which I know are usually harmless), but with wording that suggests they may contain something, it's just not clearly blood. It also revealed that my anteflexed uterus is leaning so far to the right that it 'abuts' and obscures the right ovary. Given I have suffered extensive bladder issues for years and that most of my pain is on the left side, I find it odd this wasn't mentioned because as far as I know an anteflexed uterus could be the reason I have urinary urgency, and the pull on my soft tissue to the left side could explain some of my non-cyclical pain.
I also had a colonoscopy which revealed inflammation of the ileum and I asked for abdomen to be included in the pelvic MRI. I'm currently under IBD team with NHS care waiting for an MRI (so far 8 months on list) and was concerned this could be endo related. I was assured several times it was included right up to and after the scan, but suprise suprise the report can't comment as they didn't scan it! They also didn't use contrast, which every other friend I have with endo have commented on with their own MRI experiences.
Like you I have been dismissed and left feeling very unhappy. I discussed with the GP but they weren't sure what to say, and just to wait for my gynae appointment on the NHS to discuss (been waiting 5 months for this).
The fact these issues weren't even mentioned in my follow up so that I could discuss or further investigate a potential link to my symptoms has left me so annoyed. I'm so chronically unwell and have been off work for months with pain and fatigue (not in my character not to be at work, I go even when flare ups mean I can't walk). It's very much being stuck between a rock and hard place getting anywhere just now with NHS services and it would appear going private doesn't get you much further.
I'm sorry you've had a bad experience with MRI too. I sincerely hope you get answers to your kidney stone issue. You definitely warrant a urology investigation! I just want to let you know that after my experience, you are most certainly not alone ☹️ .
HiJust very quickly, sorry you’ve had such a bad time with getting a diagnosis, I’m not surprised you feel as you do, it’s horrible.
Your waiting time for a scan is long, have you tried calling radiology to make sure they have a referral? These have a habit of going astray. It’s worth checking on their cancellations list, they crop up a lot. 🤞 for you.
It’s not in my nature either, so with you on the sheer frustration
Thank you basically the private consultant has referred me to an NHS gynaecologist at my local hospitalI can’t have a laparoscopy done at the private hospital because of my medical history ( even though I’m perfectly fine I want somewhere when I see you just in case I’m not)
It’s a good idea, they are more geared to emergencies, something private lack. I’ve followed up on scans and found referrals hadn’t got to the department in the past, more than once, and managed to get quick appointments.
Ohhhh ok well I'm coeliac 20yrs now and don't really eat much dairy but caffeine is my one guilty treat, sounds easy enough to follow and thank you for your reply. Good luck with your journey
Hey, I feel you although I had my MRI through NHS at the end of February (to look for endo as they have already done a failed lap - long story) and although they said results would take up to 6 weeks I still haven't had any back. The gynaecologists secretary has recently resigned so a new one has taken over, she told me last week that the gynae would write to me with the results. Yesterday I then get a letter to say my telephone appointment for June 22 with this gynae has been put back to November 22. I emailed the new secretary asking why was this and any chance of one a bit earlier. She told me the June one was cancelled due to annual leave and that my mri results would he discussed in the November appointment. I asked would the gynae write to me about them like I was told she would! The secretary said the gynae has been on annual leave and was back yesterday and that it was an 'admin day' so she would get round to my results and let the secretary know. Obviously I didn't hear anything yesterday!I too feel so fobbed off. I am going to write a complaint to the PALS about everything that has happened. Please could you tell me which endo diet you are following? Any book that's good as a guide or website? I've followed some tips from thisendolife website. Thanks xxx
Good luck with complaint and PALS, you should be successful. It’s ridiculous that June became November, how about a cancellation sooner, they are bound to have something. Let us know how it goes 🤞the more we do this the less we’ll get fobbed off
The website is great for diet bits, she’s knowledgeable and podcasts are good
Hi moon maiden, yes, I was trying to be patient and wait for my mri results and let that dictate if I would complain but I am going to now regardless because there have been a few issues not just the wait for these results and feeling like I'm being fobbed off. I really hope that one day the NHS can be how it was years ago and actually work but I just think it's been run so far down its in a pit. It is very good for life and death situations but for long term care and communication with patients it is awful.
Stick with it, they rely on you giving up with that as well. I’ve got a complaint waiting to be looked at by the Parliamentary and Health Ombudsman from mid last year. Lucky it is still waiting as I’ve added to it. It’s cost the NHS thousands for me because second op no colorectal surgeon, so my time, pain, no money, and cost of third op with colorectal and Gynae to remove bowel adhesions. Now blessed gallstones, pity they didn’t check everywhere Last op could’ve taken that as well.
It would be great if it could wind back about ten years, too many chiefs or would be chiefs, everyone seems to want a posh job title these days, not just NHS. I’d be happy to be able to do a job. I’ve always been happy to muck in if needed, it’s just so different and I hate job descriptions if they don’t have that clause in 😂
I hope they resolve your complaint soon I didn’t hear back from the doctors so I rang them
Apparently they have sent an email to the consultant secretary at the private hospital so basically the GP is not going to do anything it is like I’ve got nobody to help me I really just do not feel listened to you at all x
That’s crazy, what’s the Gynae going to do about kidney stones! Gynae could refer internally.
Maybe ask for a GP call back Monday to go over kidney stones, unless that’s what GP is trying to do, and find out what’s happening. If GP is trying to find more info that’s a good thing.
Do you have online access to your GP records? It’s useful for seeing things like letters.
The receptionist didn’t say just said I had to wait for the private consultant secretary to get back to herI will give it a week and have not heard anything I will chase it up
Are kidney stones dangerous I don’t know anything about them
I cannot believe you’ve been waiting so long I think that is awful treatment.Definitely complain it’s appalling can your GP not chase up the results for you
I’m just following an anti inflammatory diet
Cutting out gluten, red meat, alcohol, caffeine and dairy
Instead of milk in my tea and coffee I have Alpro barista oat milk it’s okay
I have a little goats cheese for my cheese fix as it’s not dairy it’s actually nice!
I’ve been trying to eat more salmon as omega 3 helps apparently
So today I’ve had fruit for breakfast
Tuna salad wrap on a gluten free wrap for lunch
For tea I may have salmon with veg and potatoes
Snacks pitted dates and nuts
Hope this helps
(apologies if this is not completely accurate I’m trying my best and this is what I’m finding to eat)
That is just awful that they are making you wait till November I would at least expect your results in writing for the consultation! I will definitely complain
I’m basically just trying to eat healthily I have cut out all gluten products
I have a cut out dairy and red meat
I am reducing caffeine and alcohol
I think some people do this a lot stricter than me but I’m just trying to find my way with it at the moment
Thanks for replying! The GP's don't care. The one who referred me in the end because I asked her to didn't even prescribe me tranexamic acid to start with, just mefenamic even when I was having massive blood clots at the time and really heavy bleeding on my period. That was in March 21, then in September 21 when I had the first gynae appointment (telephone) she said "oh you should have been prescribed tranexamic aswell". I feel bad to say it but I don't trust any doctors now especially after this gynae fucked up my laparoscopy last December.
Thankyou for letting me know a few things that help you, I don't eat much dairy at all now cut out all milk. I have the odd bit of cheese when I can't find the vegan cheese in Aldi! I drink oat milk too I quite like it in tea and coffee. It's alcohol and red meat that I haven't cut at all. It's difficult when your partner wants to buy red meat in the weekly shop! I get Sourdough bread as that's lower in wheat than other breads (apparently) and don't eat loads of it and I have gluten free pasta but don't even have a lot of that nowadays! One thing that I haven't cut out is coffee! I love a coffee from my coffee machine I know I should try and at least get a caffeine free ground coffee! X
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