MRI with endometriosis ?

[Bethyxox]

Hi, so I’m going into the doctors to request an MRI as I’ve moved back to the UK and need to go through the whole diagnosis process AGAIN, to receive any treatment. I’ve been in and out of a+e non stop and have just had an abdominal ultrasound which I’ve been called back for a follow up appointment one week after on “emergency” I’m going in tomorrow to request an MRI to help speed up the process as my doctors are so rubbish, no offence as I love my hospital and everything it’s just my GP. Now I know to ask for contrast dye, and to scan my entire pelvic and abdomen , but are there any particular clinics I should request ? Or anything else I should request ? I live in Upminster, Essex. I just need advice as I’m really suffering and am on a waiting list for surgery but it’s been over a year which I know is normal but I’ve been given no pain killers or anything. Thanks sisters 💋

[zerendipity]

The problem with endometriosis is that it’s often difficult to diagnose without a laparoscopic surgery. Ultrasound and MRI can be done and yet these methods will not show the extent of the disease. MRI may show deep infiltrating endo, adenomyosis and pelvic masses. So I would not rely on this only. You can have an MRI and the doc might say they didn’t find anything and that’s because not all types of endo actually show up on this imaging.

I have endo cysts but also lesions on my peritoneum and elsewhere. Cysts were seen with ultrasound but the rest didn’t show on any imaging available to us right now. I think maybe this new amazing method called PET scan would show endo, but it’s super expensive and difficult to get unless you have loads of money to go private.

“MRI is particularly helpful in ultrasonographically-indeterminate pelvic masses and diagnosing endometriosis of the ureters, bladder, and rectosigmoid. Imaging is inadequate for detection of pelvic adhesions or superficial peritoneal implants.”

and

cochrane.org/CD009591/MENST...

To be honest, if things are bad enough to warrant frequent emergency room visits, you should probably push for a laparoscopic surgery - so they can properly diagnose you and also remove whatever endo and adhesions they find. Remember, it’s very important to get excision surgery, not laser/burn the endo lesions because the recurrence in this case is much faster compared to excision. Excision is the gold standard for endo surgery.

I suggest you join the Endometropolis on Facebook, they have a list of tried and tested doctors and clinics all over the world, including UK. And I mean tried and tested by endosisters Lots of UK ladies there.

Good luck!

[asoullessstatic in reply to zerendipity]

I second all of this, the best course of action IMHO is to get yourself refered to a BSGE aproved endo center and request a diagnostic lap. bsge.org.uk

[zerendipity in reply to asoullessstatic]

That’s what I was looking for - the BSGE centres. I knew there was some way to find the specialists in the UK but could not remember exactly what it was called.

[asoullessstatic in reply to zerendipity]

After the last 15 years of missed things and screw ups I would reccomend to everyone pushing for a BSGE center referal. I've had 6 ultrasounds, a contrast CT, a MRI and a contrast MRI and they all missed the endometriosis for years and years on end. A lap done by experienced acredated surgeons the only way to know for sure.