Can I get an MRI?

[spochet]

Hello everyone,

I am new here and would love to hear your thoughts and experiences as I am feeling very lost and confused.

In the summer, I had an ultrasound scan during which the nurse told me I probably had endometriosis and that I should discuss this with my GP. My GP then referred me to a specialist at the acute gynaecology department at Homerton Hospital; the doctor recommended I do a laparoscopy and booked me in for surgery. I was quite overwhelmed during the consultation and didn't really have time to process all the information she gave me.

After speaking to a few friends who have endo, I felt quite scared at the idea of going under the knife and also wasn't sure whether there was much point of doing it at this stage as the pain is bearable and doesn't stop me from having a normal life, and removing tissues (should they find any) even though it won't stop the endo from growing back doesn't feel like the right course of action. A friend told me that she managed to get an MRI - she had to convince her GP and kept insisting - which was enough to diagnose her endo and meant that she didn't need to get a laparoscopy for now.

Have any of you been diagnosed by MRI and do you know whether it is something I can actually request through the NHS? I do want to find out whether I definitely have endo and the extent of it but I am hoping that I can get an MRI (I understand that it isn't as conclusive as a laparoscopy) first before having to decide whether I do want to undergo surgery.

Many thanks in advance,

Steph

[asoullessstatic]

Only deep penetrating endometriosis shows up on an MRI (usually a contrast MRI, so they inject you with a dye which is rather unpleasant in my experience), superficial endo will not show up, the vast majority of endometriosis will not show up on scans, MRI, ultrasound or CT. Which is how they missed mine for 15 years despite having several scans after acute hospital admissions for unexplained abdominal pain. Lap is the gold standard method of diagnosis unfortunately.

It's up to you what you want to do but be aware the chance of diagnosis via MRI along is slim.

[luthien]

Hi, welcome, it's a scary world this stuff, and what you're going through / feelings / worries all makes sense.

I'm just going to be honest though:

Endometriosis cannot be diagnosed any other way than a laparaoscopy; it can only be seen to be identified as due to it's nature it cannot always be seen on an MRI or ultrasound. Usually only the adhesions / scar tissue / old end shows up, not the active amount.

A laparoscopy will show how much endo there is, where it is, what organs it is sticking together, whether further surgery is an option, what impact on your health it could have (depending where it is), what treatment would be best, and what to look out for symptom wise should it start to affect certain organs.

Surgery to excise the endo is the only way to reduce it's growth, and stop it affecting other organs. Yes it won't stop it growing back but it could grow back slower. Endo when in large enough growths can produce its own oestrogen and so accelerate it's own growth if left alone. Hormones can put it into hibernation, which is all some women need to have a better life, or they simply don't wish to have surgery, or aren't at that point yet. Not having surgery can run the risk of it growing, okay so it may be slower with hormones but what could be a little patch of endo on the surface of an organ can become infiltrating (penetrating through) causing worsening symptoms and often requiring emergency surgery or long waiting times for surgery with worsening symtoms - something to bear in mind.

Everyones symptoms are different and don't correlate to the amount of endo; some women have a bit of endo and lots of symptoms, some women have a lot of endo and little symptoms. So there's no real way to tell the extent or what it's doing to other organs without having a look.

For a bit of info and my history, have a read of my post:

"All this effort does pay off - my story - hope it helps !"

xx

[Bluetop1981]

I was referred on the NHS for a MRI as I can't have a lap due to a previous scar from a laparotomy and it would have involved disturbing that scar tissue. The MRI was mainly to confirm if the ovarian cysts they could see were non cancerous - so it wasn't so much diagnosing endo as ruling out ovarian cancer. They were able to see a few interesting things - blocked tubes, state of uterus, fibroids etc but at the same time, I had an internal ultrasound by an excellent Doctor on Harley St (at the The Gynaecology Ultrasound Centre). He provided a very detailed report of where the endo is, how far it has spread etc. This part was completed privately and this is what is being used for my treatment now. A lap has been completely out of the picture for me.

It's worth knowing the state of your endo so you can make informed decisions of how you want to deal with it going forward - it may not cause you pain but it could still be doing damage. I wish I had known more about my condition 10 years ago as I'd have made more informed choices.

Good luck with it!

[AllthatGlitters]

Hi Steph, I had an MRI which showed up Adenomyosis. I also had an ultrasound scan which did not show up Endometriosis. Based on my symptoms the GP and consultants are pretty sure I have Endometriosis but that will only be 100% confirmed when I have had a laparoscopy. Of course you can ask for an MRI through the NHS which may show up other illnesses however it won’t show up Endometriosis (if only it did ...... x

[juliamallik66]

My specialist asked me to get an mri as they show all endometriosis, even microscopic bits they might have missed. This was in the US tho. Not sure how it would go about on they nhs