Feeling deflated after my mri result

[Chloelouise92]

So I’m feeling a bit deflated after my mri result. So the gynae secretary read me the letter written by my consultant which said that scarring was seen on the uterosacral ligaments, which is where endo was removed from previously. But no other indication of endo (which she said was good news) however I feel a bit deflated because I know all this pain must be caused by something and I’m convinced it’s my Endo that has come back.

Has anybody else had a similar experience but then gone on to have a laparoscopy and Endo has been found?

[Lily1986]

Hey, I’m sorry you’ve had this experience.

MRI’s are so hit and miss, it largely depends on the radiographer reporting and whether they know how to spot Endo on the scans.

Honestly I don’t have any faith in MRI scans after all mine missed extremely severe and complex Endo for 15 years. By time I was diagnosed through lap it was too late I was infertile and with permanent and extensive damage.

Even now with a diagnosis many scans still miss the disease and even when they do pick it up it’s never anywhere near the full extent of what is seen during surgery.

I’d recommend doing a subject access request to your hospital to obtain the scan images for your own records. Once you have these you will have them readily available should you wish to seek a second opinion.

Best wishes to you ❤️

[Chloelouise92 in reply to Lily1986]

Thank you so much for your reply and I’m so sorry to hear about your experience.

Half the battle is trying to get somebody to take you seriously in the first place. I was diagnosed by a specialist that initially told me after an internal ultrasound I didn’t have endo…she then asked what I wanted so I said a laparoscopy as this is the only definitive way of knowing and I kid you not she rolled her eyes at me.

I feel worse now than I did before I was initially diagnosed. I just need to know I’m not going mad and there is a reason for all my pain and all my symptoms.

Thank you for listening and taking your time to reply to me ❤️

[Moon_maiden]

Hi

I’m assuming by saying scarring they mean adhesions scar tissue, it’s worth checking what they mean. Scar tissue can cause horrible pain as well. If you’ve any external scars the tissue can be stiff/tight. Scans used to not be the go to and lap was, now they are saying it the other way around and trying not to do surgery all the time. Adhesions from surgery is another excuse. I am just a tad sceptical these days.

I’ve had surgeries since Endo removed and told none, but had adhesions. One was via gynae and one general surgeon.

That doesn’t mean to say there isn’t Endo in the scar tissue or anywhere else, MRIs never show anything for me.

Request a copy of the report from the hospital so you can see what’s been said, you can also get the pictures, although interesting hard to tell if anything is wrong.

There will absolutely be a reason for your pain, don’t ever think otherwise.

[Chloelouise92 in reply to Moon_maiden]

Hopefully the appointment will give a clearer picture of what’s going on but the waiting around is horrible.

Although it’s not ideal I suppose I’m really wanting more surgery to find out what’s going on and if it is endo hopefully they can remove it.

Thank you for taking the time to reply 😊

[Boxerdo in reply to Chloelouise92]

pretty much in the same situation apart from the MRI. I have my 3rd lap booked in for next week which i pushed really really hard for.

I was diagnosed via diagnostic lap 2022 with superficial endo and inserted the IUD with a specialist endo gynae in NHS then had 2nd lap 12 months later for excision with a different consultant, said took the spots of endo away and sent 2 off for histology..... came back neg for endo.

Also just realized on my discharge from my diagnostic lap, says POD and RIGHT uterosacral Ligament, but on my 2nd lap with the man is says excised from POD and LEFT uterosacral Ligament which is not where it was diagnosed.

So this lap is with another specialist under the NHS as I have refused to have the bloke as he was so dismissive with it all didn't even get a post op follow up with him he just sent a letter!

I guess what I am worried about is going in and they saying nope, no endo.... but my symptoms are all coming back struggling like heck and the coil initially stopped my bleeding, I am bleeding every month to every other month now?

[Chloelouise92 in reply to Boxerdo]

Sorry you’re going through this. It’s so difficult to trust in surgeons and doctors now and that’s such a shame. They’re so over stretched I don’t think the care is good enough. It’s taken since June when I was referred to get an appointment for March. I think that’s only been pushed for because the mri has picked up something, god knows if it was completely clear!

I was bleeding pretty much daily for around 3 months straight, surely that’s got to be Endo related…

I have the exact same worry that if it isn’t done by a specialist or they miss it if it’s there which I’m convinced it is

[Moon_maiden in reply to Chloelouise92]

I’d be the same with wanting surgery. If they do,🤞for you, ask them to excuse the adhesions and not just cut them. Found out last surgery they just cut mine rather than remove them, probably knitted back together straight away.