Flare up/doctors tests

[JoanneCrow]

Hi all!

So I finally worked up the courage to speak to my docs about my irregular cycles and pain. As I felt I might be having an endo flare up. They have referred me for an ultrasound and some blood tests and told me to take a pregnancy test.

My issue is when I was first getting diagnosed with endo they couldn’t see anything on the scan they only found it through a diagnostic lap. Has anyone had a scan and they’ve found anything? Does it depend on how bad it is and where it is?

Hope you all can help and keep your fingers crossed for me that I can get this sorted without another op 🤞🏻

[LEH199]

Hey - Apparently it's incredibly rare for endometriosis to be identified on an ultrasound, Radiographers typically have to be very experienced and specially trained to identify potential endometriosis. I think as part of the investigation process/ pathway they arrange an ultrasound in order to also rule out other possible causes of your irregularity.

My ultrasound has always come up fine, bloods are a mix sometimes they are 'OK' other times have had anemia or low white blood cell count. Only after an MRI last month have they found what's believed to be bowel endometriosis however they still cannot conclusively diagnose it until my lap next month.

There are other options to surgery (although it's still viewed at the 'gold standard' for endometriosis diagnosis) if you don't want to go down that route in order to try and help manage your pain/ symptoms however as you're probably aware - still no cure. X

[JoanneCrow in reply to LEH199]

Thank you for your reply. I thought that was the case if I’m honest but at least we can rule out any other issues.

Unfortunately when I was first diagnosed I went through lots of different pills and injections and nothing helped until they went in and got rid of what was there!

I’m not absolutely against having another op I was just hoping to avoid it if possible.

I hope your lap goes well and you’ll soon be as pain free as possible x

[LEH199 in reply to JoanneCrow]

You're welcome and I don't blame you, I've done the same myself and have found hormones and prostrap all to be horrendous not just on your body but mentally. Awful that surgery feels like the best alternative! X

[Jackie990]

As far as I know, from what my dr has told me is it is very difficult to see endometriosis on any scans unless it is very deep in the tissue. I've had 7 laparoscopic surgeries now, the last 4 were with a specialist that does robotic surgery (Da Vinci Robotic Surgery). My endometriosis has never been seen on any scans. My last two surgeries were 10 months apart and endometriosis was found all over both times. The last one, my ovary was fused to my pelvis and that wasn't even caught on a CT scan I had shortly before my surgery. I believe the only way to actually diagnose endometriosis is by laparoscopic surgery unfortunately. I'd say if they found endometriosis before during the scope there's a good chance its the culprit of your issues. Best of luck to you, don't give up.

[CurlyandConfused]

Mine showed on ultrasound - as I have endometriomas (ovarian cysts caused by endometriosis). These are clearly see but in the absence of cysts, it is usually not possible.

I had an MRI scan which showed a lot more endometriosis - none of it was visible on ultrasound. but the gold standard for diagnosis is still a lap!

[JoanneCrow]

Thank you for replying!

I guess the scan must be to rule out any other cause rather than see the endometriosis!

I Hope you are doing much better now, was it quite difficult to get so many surgeries?

I know after having one they were very reluctant to do my second one!

Thank you for your kind words and help x