Who and how to get a diagnosis

[Bxnxnx24x]

Hi!

So I'm currently endo diagnosed although not lap confirmed. However I've got a sneaky suspicion adeno could also be lingering.

As the wait times are ridiculous here and I keep getting rejected referrals or lost referrals I'm wondering how one goes about speaking to someone about adeno. Someone who actually understands the condition.

I'm based in the south west UK.

Would MRI pick anything up? I've had u/s & trans v and showed fluid & heterogenous myometrium which I believe is an indicator.

Thank you

[Kieraface]

hiya,

So I have been diagnosed with endo and adeno via an MRI so yes - if you look to get an MRI it should show adenomyosis if you have it. I’m sorry if you do have it as it’s not a nice condition and only real treatment is a hysterectomy. Wish you the best of luck going forward.

[Bxnxnx24x in reply to Kieraface]

Sorry to hear you've been diagnosed with both - ive been reading plenty of other posts and how all you ladies suffer so badly.

I'm considering getting an MRI done privately but it's costly so obviously wanted to make sure it's going to show on there before I commit.

Would you mind me asking what it was they saw on the MRI that gave them a definitive answer of adeno? It's a sensitive ask so I understand if you don't feel you want to share that information . X

[Kieraface in reply to Bxnxnx24x]

So when I had an ultrasound my uterus looked bulky and when the gyny did a manual palpitation it felt bulky so he sent me for an MRI and it shows how enlarged it was and then I think it showed loads of little infiltrations - I’m pretty sure I have what is referred to as diffuse adenomyosis it’s awful and I wouldn’t wish it on my worst enemy. Endometriosis and adenomyosis are very unforgiving illnesses.

Yes a private MRI is very expensive. I have private healthcare through work and it costs around about £1100 for a private MRI according to my paperwork. It maybe worthwhile trying to push your GP to get you a gyny referral and push for an MRI that way, although you would ideally like to be seen by a specialist centre for them to pick it up as not everyone is trained to spot it x

[Bxnxnx24x in reply to Kieraface]

I'm assuming you initially started investigating for endo & that's when they suspected adeno?

I'm lucky in terms of my symptoms (whatever condition it may be) that they don't affect me as bad as some but it's still pretty rotten. My understanding of diffuse is its spread everywhere as opposed to focused on one spot. I'm sorry you have to go through this.

My GP has been brilliant so far, it's unfortunately the gynae team who only want to help if I get an IUD. Something I've done alot of research on and not something I personally feel would suit me. I know it works well for others though. I also want to find the cause of the issues before I 'mask' the symptoms.

I feel like private is the way forwards and you can't put a price on your health although £1100 did make my eyes water, haha. X

[Kieraface in reply to Bxnxnx24x]

Yeah it made mine water too! It’s a lot but like you say - your health is worth it!

Yes diffuse means it’s gone everywhere. Focal is in specific places x

[Cocoacupid]

hey I’m based in Cornwall in the south west uk it’s taken so many years for me to get diagnosed . I have the coil but was still bleeding . I had emergency lap as I could hardly walk. And I kept being admitted. Thankfully a locum dr put an emergency gynecology appointment down as I had a cancellation appointment . I had been on gynecology radar but the wait for lap is really long. As I said luckily I had a good locum in my surgery who pushed for a diagnostic lap . X

[1Poppy1234]

I had to pay a private consultation to get any help at all then took my plan to the doctor gor action. It's not been easy but at least I've now had biopsy hystoscopy and decapeptyl injections.

[Avourneen]

An MRI will show up adeno really well, it shows up better than endo and apparently adeno is frequently missed on a lap if the surgeon isn't really good it is one of the few things it is easier to see on the MRI than the lap. if your surgeon is good and following best practice he/she should do an MRI before a lap anyway to help with the surgery. It will show them more of where the endo is (for example bowel endo will show up that could be missed on a lap) so that they know whether they need an additional surgeon such as a bowel or baldder specialist for the op. The NHS are reluctant to do MRIs as they are expensive but you can get one done privately, it's a good idea and a endo specialist will almost always recommend one before doing a lap.

[Zozt]

Hello. I have adeno and endo. My adeno was spotted on an MRI but my endo wasn't visible or diagnosed until I had a laparasocopy. Not all endo is visible on an MRI - a laparascopy is the only way to get a definitive diagnosis for some people. I would recommend calling the Endo UK helpline or looking at their website for some advice xxx

[Starry1977]

hi, I have stage 4 endo with adeno. Initial lap showed endo with DIE so sent for mri. This showed lots of adhesions, endo, and adeno was diagnosed due to a thickening of the junctional zone (whatever that is lol), I’ve also since had another ultrasound to look for a re growth of cysts and this time the US mentions adeno because of a heterogeneous echo texture throughout a bulky uterus. However this was never mentioned on my US I had before lap, so all depends I guess on who’s doing or reading these things.

[Lindle]

The main indicator on imaging for adeno is a junctional zone of 12mm or more with a few other indications. It is picked up well on expert ultrasound and you have an expert in Bristol.

oliverodonovan.com/