Lap after normal scans

Hi ladies

Hope you are all as painfree as possible today ☺️

I was seen this week by gynae and they've decided to schedule me for a laparoscopy as the last three months of cerazette have not improved my symptoms and in fact they're getting worse despite the treatment, v strong painkillers and diet changes.

I've had two scans in the (20 month) run up to this point, the last of which was in August, and both have been normal. I was wondering if anyone on here had had normal scans before a lap but then had a lot of endo found during the surgery? I'm getting myself anxious about adhesions or about damage to my womb, but equally scared that they won't find anything and there will be no explanation for my pain and horrible symptoms. It's awful to be hoping for disease to be found - I'm just so scared of having an unexplained problem that can't be fixed .

Feeling v vulnerable and low at the moment. Would be grateful for any advice from those further along this journey than me. Thank you xx

3 Replies

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  • It could well still be endo - I had a scan carried out in general radiology in July 15 which showed very little - a couple of cysts on the right, which were described as paraovarian cysts, plus hydrosalpinx in the right fallopian tube. It was suspected that I had a ruptured cyst. Endometriosis was not mentioned. Fast forward to Jan 16 and I had a lap which found severe and extensive disease. I then had another scan in July 16 carried out by an endo specialist at a bsge centre which found 4 very large lesions plus adenomyosis. I had a second lap this week so they could fully map the disease and they found patches on my bladder which hadn't been picked up in either scan. Basically, if the lesions are smaller than 1cm they won't show up, and only a specially trained doc using a high resolution machine can spot endo on an ultrasound. If you're being seen by general gynae chances are they won't have been able to identify it on a scan.

    I hope this helps. x.

  • Hey,

    Endometriosis is very rarely picked up on any kind of scan, which is why a laparoscopy is still the only definitive way to diagnose it.

    I had mine done this week, and they did find some which they treated then and there as it was small (but boy was it causing some issues!). Funnily enough I was talking to the nurse in recovery and they she said that even when she has had people where they have found nothing, having the Lap often seems to have really helped or even stopped their symptoms, as though just having things moved around a little helped which I found quite interesting! But I totally get the wanting them to find something as I was the same, because as weird as it sounds to want their to be something, If there is at least then you know what the problem is and can then have a good go at trying to manage it!

    Best wishes!

  • For what it's worth I've now had two U/S scans an MRI and 3 internal exams and every single one has reported different results. They aren't especially clear I guess so not all that easy to distinguish endo from other things and does seem to depend on the driver a bit.. I am due for a diagnostic lap first week of December. The last scan the MRI suggests it's less severe than thought previously /in different places so they may also do some surgery as well as diagnosis now. Hugs, I understand how scary the uncertainty is.

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