Rejected ultrasound referral

[joniblue]

Hi all, I had a doctors appointment on 9th Jan to discuss endo (in the process of getting diagnosed - GP says I most likely have endo) and was referred for a pelvic and transvaginal ultrasound to rule out other problems (cysts, fibroids, etc..) But today I was told that the referral has been rejected by the radiology department of the hospital on the grounds that this method is not the way to diagnose endo. I was well aware of this fact and wanted the opportunity to rule out the aforementioned issues. Has anyone had any experience with this? Should I push for another referral? Thanks x x

[emm27]

Yes yes yes, you need them to rule out endo by investigation, not guess woork. My endo was confirmed by a scan last March, after 15 years suffering. I had surgery to remove endometriosis in August and another due in March.

Please ask , it's your right, we know our own bodies right ?

Stay strong, sending hugs x

[joniblue in reply to emm27]

Thanks so much for your reply. Do you mind me asking what stage you were when you were diagnosed? I’ve heard that endo can’t be diagnosed by ultrasound unless it’s quite advanced, so maybe that’s why they’ve rejected the referral. Thanks so much for the advice, I’ve got another doctors appointment tomorrow so I’ll definitely push for results. All the best x x

[Lindle in reply to joniblue]

I think it depends on what your GP said in the referral and whether it was a referral for general pelvic pain (to rule out the things you mentioned) or for suspected endo. If they referred you direct to a radiology dept for a scan for suspected endo I can see why it would have been rejected. The NICE guideline says:

'1.4 Referral for women with suspected or confirmed endometriosis

1.4.1Consider referring women to a gynaecology service for an ultrasound or gynaecology opinion if:

they have severe, persistent or recurrent symptoms of endometriosis

they have pelvic signs of endometriosis or

initial management is not effective, not tolerated or is contraindicated.'

You really need to be first referred to gynaecology for them to do the scan. As you say ultrasound only shows more advanced endo so endometriomas and deep endo. I should get your GP to refer you by the right channel and be sure they know you must only be seen by someone with a special interest in endo and not a general gynaecologist.

[emm27 in reply to joniblue]

Hi, yes I am stage 4, so very advanced, I would still push if I was you. Good luck xxx

[Noodle1984 in reply to joniblue]

I don’t want to high jack this post but I had stage 4 recto vaginal Endo. I had at least 20 different scans (internal, external, ct scan), even a pelvic specific mri and none of them showed Endo. When I finally got seen by an Endo specialist he was able to tell with a transvaginal ultrasound where my Endo was. My Endo was so bad that I almost ended up with a colostomy bag. Make sure to push for those scans to rule out other things and to get a diagnostic lap eventually. I’m sorry you’re going through this.

[Cleo8]

Hey 👋 I paid for a private scan after having severe pelvic pain and they found a 7cm emdometrioma. This got the ball rolling with the NHS after I passed report over to the gp. They referred me and within a month I had another scan with the NHS and the found another two smaller cysts on my left ovary. I'm now in the process of waiting for lap and cyst removal. I know everyone doesn't have the means to pay for a private scan but it was so worth it if you think this is something you could do xx

[Moon_maiden]

HiI’d ask GP for a referral for MRI of pelvis and abdomen, regardless of whether they end up doing an ultrasound. MRI will show up more and check on any gastro issues as well.

Keep pushing, it’s very easy to get knocked back. Last year I was micro managing as referrals went awry and had to keep checking they’d been received.