Endometriosis UK
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Undiagnosed and feeling lost

Hi all this I should my first post on here and hoping for some advice :-) I visited my dr 3 months ago as I had come off the pill to start trying for a baby, and since then had been experiencing horrific deep pelvic pains on ovulation day which carries on until my period finishes. My doc said straight away she thought it was endo and I was thinking how lucky I was to have such a supportive doctor! She sent me for an ultrasound / tv scan which was incredibly painful and left me in pain for days afterwards.

But now my doctor has called me to say the results are back and all looks normal so she doesn't think we need to do anything further? I read online that endo won't usually show up on a scan but she is a doctor so suriely would know this?? In the meantime I am not sure how long I can be off the pill for due to the pain,. It can't be normal to be in so much pain for 2 weeks out of 4 :-(

Before I went on the pill many years ago I had the sameness symptoms, they did the same scans and couldn't find anything, and I was then diagnosed with IBS. it could have been endo all along but how do I persuade my dr to refer me??

Sorry for the rant and thanks in advance to anyone that can help me! Xx

1 Reply

It is really common for endo not to show up on ultrasound and yes, your doc should know that but sadly too many of them don't. Any lesions smaller than 1cm won't show up and anything bigger will only be seen by a skilled radiographer who knows what they are looking for. I had what was considered to be a normal ultrasound 6 months before being diagnosed with very extensive disease. I had also been diagnosed with IBS (but it's not IBS, it's bowel endometriosis).

You can ask to see a different GP if you don't want to see the same one. I'm sure you already know this, but you need a referral to a gynaecologist, preferably one at a BSGE centre (if you google this, there's a list). Just tell her you are very worried about the pain you are experiencing and want the referral. If she refuses, complain to the surgery manager and see someone else, but hopefully it won't get to that point. x.

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