Hysteroscopy instead of MRI to diagnose Adenomyosis?

[TallulaShark]

Back again. So after being refused an MRI twice, after lap showed no endo but severe adhesions, I complained to the consultant secretary asking for the reasons in writing. I was told at my appointment that a lap was superior to an mri. I didn't have the balls to argue at the time, but in my email pointed out that a lap only shows outside the womb and not inside. And that the adhesions may explain my pain but not my extremely heavy bleeding. So now I've been offered a hysteroscopy instead of an MRI. Does anyone know why they are so reluctant to do an MRI?? I think I'm going to accept the hysteroscopy, but while I wait, I might see if I can scrape together the funds for a private MRI. I keep reading that imaging is the best way to look for adeno?

[Lornalost89]

This will help to understand if you have endometrial hyperplasia which can cause heavy bleeding. I've been fighting for this as my endometrial lining is more than 2cm thick which should be looked into but they aren't concerned as theirs no polyps 😵‍💫

[Lindle]

The hysteroscopy won't show adeno as I suspect you already know. A lap can give an indication from the appearance of the uterus, for example it might look enlarged, spongy, boggy or asymmetrical which can suggest adeno. Ultrasound and MRI are very good now at diagnosing it, but MRI is expensive. So that's probably a reason.

I'd be concerned about the lap showing severe adhesions but no endo. Unless you've had previous surgery adhesions don't come from nowhere and severe endo fibrosis presents as dense adhesions. The active endo can be several centimetres beneath and not visible at a lap. If it was done in general gynaecology they might well have missed deep endo. Will DM you with more info.

[TallulaShark in reply to Lindle]

The consultant I saw this week did actually briefly mention that there could be endo beneath the adhesions, but I've got to wait 8-12 months for the next surgery.

[AllthatGlitters]

MRI is required for a diagnosis of adenomyosis, I have this condition and have had a couple of MRI scans to see if the condition is progressing.

You could put a complaint into PALS if you feel you are being ignored, we definitely have to advocate for ourselves x

[TallulaShark in reply to AllthatGlitters]

This is what I thought. I've literally asked for an MRI twice since my lap last month, mentioning Adeno and they're just completely ignoring my request.

[Tangoandmax]

My Adeno was diagnosed during an internal ultrasound. There are a number of signs which indicate the disease is present. It was then confirmed with MRI.

Both were carried out by staff who have a specialism in Endo/Adeno - this is so important. I had 7 years of scans which showed nothing prior.

Do you have any of your previous scan reports? I’ve attached what was listed as located which indicated Adenomyosis you might be able to cross check if any of it has been mentioned? (Not sure what no. 5 means) If you don’t have, absolutely request all your records because it’s really valuable to have.

Hope this helps! X

Results

[TallulaShark in reply to Tangoandmax]

I've only had one ultrasound scan three years ago, no report but was told "all normal". I'll request the report!

[Clarabellapp]

Is your heavy bleeding causing anaemia? I visited accident and emergency in a period of extremely heavy bleeding, and my blood count was really low. Because I was present in the hospital they sent me straight for an iron infusion, and arranged and MRI scan while I was there. I don’t believe I would have got it if I hadn’t gone to accident and emergency. It pushed me forward in queue. HB was very low though (58). MRI diagnosed Adeno and fibroids.

[TallulaShark in reply to Clarabellapp]

Yes I am anaemic too. I almost went to A&E twice during two particularly horrendous periods where I went through several pairs of underwear and trousers and boxes of night-time pads in 24 hours. Passed fist-size clots and felt dizzy. I wish I had gone.

[1Poppy1234]

They found my Adenomyosis with an internal ultrasound scan which your Dr can refer you for. I wouldn't have hysteroscopy without anaesthetic depending how sore you are inside my uterus is tilted and a pinhole so after trying twice agony pain bleeding for weeks they finally did it with anaesthetic. I'm too struggling to get an MRI but if you Google some hospitals do it privately for nowhere near the price of private hospitals. Hope that helps. X

[TallulaShark in reply to 1Poppy1234]

Yes I've actually just found a hospital near me that does private mri scanning that doesn't cost the earth!

[Loveneige]

Hi, I had a hysteroscopy first to see if anything was causing my pain and heavy bleeding. After that when it all looked OK inside they referred me for an mri which showed up adenomyosis and endo. I'd already has an ultrasound which picked up my endometrioma. I hope you get what you need.

[TallulaShark in reply to Loveneige]

I did wonder if this might be the case too, but I've already waited years to get where I am now and I'm getting frustrated and impatient. 😅

[Loveneige in reply to TallulaShark]

I feel you on the waiting game. I'm a year waiting for surgery and the not knowing when is SO hard.