MRI scan results back - what now??

[Regblue]

I got my scan results back via the NHS trust app last Thursday. From what I can decipher, they have said signs indicative of deep infiltrative endometriosis amongst other things described from the image, such as a big cyst on one ovary and multiple enlarged follicles on the other.

I’ve had to go through PALS at the Trust as I could not get hold of the endo team for 3-4 weeks of trying via email or phone. PALS have been really helpful. They’ve come back to tell me that there is a 1 year wait for a follow up appt with endo team to discuss scan results. I feel I can’t wait that long to go through the results with a professional and discuss what it all means for me and if there is any surgery or treatment indicated or required.

This is such a long time. I’m so upset. I’m trying to conceive also and had a miscarriage in May time too so of course this is now on my mind as to whether endo is playing a part. I’m wondering about just asking for a private referral to move things along. Anyone else experienced similar wait times? What did you do? I think I’m just looking for thoughts from people who may have experienced similar as it’s so awful and I know I won’t be the only one. Thanks.

[Tangoandmax]

Hello, the waiting times really are awful for everyone at the moment. My inital GP referral to gyne was November 2022 and I’ve only just had surgery. I also had to make four complaints to PALS, without them I wouldn’t be at this point.

It’s great you can now log in and see results but not great when it takes so long to get them actually explained to you and a plan of action for treatment. It’s a horrible horrible limbo. Whilst waiting I found the consultants secretary details online and emailed her regularly to share how much I was physically and mentally struggling. They should be seeing people based on severity of symptoms and impact to life, reiterating where you are to them is beneficial.

If you’re struggling, it would absolutely be worth seeing a private specialist, they could at least explain MRI findings for you. You can also request copies of the scans (subject access request) and take them with you for their review. Do make sure it’s an experienced/highly regarded specialist. I had a disappointing experience, whereby they didn’t want to hear what I had to say just repeatedly said pay for surgery to find out rather than give their opinion on scans and offer advice for symptom management, which was needed. You also don’t need them to refer you for a private appointment, It’s worth checking if you have a BSGE centre in your area and look who their consultants are to see if they do private appointments on circle health, you can book directly on there.

Hope this helps x

[Regblue in reply to Tangoandmax]

Hiya, thanks for taking the time to reply. That is all really good advice. Unfortunately the team have not been answering the phone or email. Which is another reason I’ve gone via PALS. Sorry to hear you have had to use PALS too. They have been really helpful for me.

I’ve booked a private appt for next week! I’ve asked PALS to help me see if they will release my scan images and results to the private consultant - who seems to link in with the NHS hospital too. So will see what happens with that. The consultant looks highly specialist and is on circles website. Thanks for the advice on this!! X

[Tangoandmax in reply to Regblue]

I’ve had some wins through PALS so it’s absolutely worth taking the time to complain. Overall they’ve been helpful for me.

I hope the private appointment goes well for you!

[CitizenErased]

Hi, so sorry you're going through this. I'm in the same boat! I had an MRI in the summer and my consultant sent the results through the post a few weeks ago. It was all medical jargon and I had to ask the lovely people in this forum what it meant. Mine seems to indicate deep endo too.

I called my consultant and spoke to her secretary, who moved up my follow-up appointment (since it hadn't even been booked at that point) because I said I couldn't wait that long to talk about what it all means and what's next. The best they could do was mid October, but I've received another letter since cancelling my appointment. They haven't bothered to rebook it either. I even just asked for five minutes on the phone to the doc but they won't let me. Won't even pass my message on. It's ridiculous. So I know how you feel!

You could try calling them and asking them to move up your appointment. If you mention that you're trying to conceive that might help. But if you can afford to go private, that's probably a good idea. NHS waiting times aren't going to get better any time soon.

When I was super upset about having to wait so long to talk about my results, I got lots of advice from everyone on here. One person mentioned a Dr Morton online who you can book an appointment with, and who can talk to you about your scan results. If you look at my post (titled 'So upset. Need to rant'), you'll see all the advice I was given.

If you ever need someone to talk to or vent to, feel free to PM me 💜

[Regblue in reply to CitizenErased]

Hey thanks so much for your reply and kind words. Sorry to hear you’ve had a similar experience. It's absolutely awful how we are all being treated!! I’m trying my best to contact the endo team and I am trying to push for answers soon via the NHS. In the meantime I have booked a private consultation to see if I can at least gain some clarity on the scan results. As it’s all really scary and I don’t know what I’m dealing with or what the future looks like. Which isn’t a nice feeling. I’ll be sure to check out your other post and thanks for the advice. Same to you if you need anyone to talk to. Good luck! xxx

[Hello33]

Hi it makes me so mad that so many of us are experiencing the same kind of thing! I've decided to go private. I went to my Drs the other day and asked for a letter stating my previous operations and my current MRI results. Hope you get some answers soon!

[Regblue in reply to Hello33]

Me too! It’s absolutely awful. I’ve booked a private appt for next week to hopefully gain some clarity on my scan results. Good luck with your private appts too!!