Awaiting laparoscopy after negative scans ?endo

[helen87]

Hi everyone 🙋🏼 Ended up here after desperately hunting for answers. (Not so) brief history: 30yo always suffered from killer cramps and heavy periods as well as deep pain with sex (positional). Just accepted it and thought I was one of the unlucky ones. Always told I had a low pain threshold. Fast forward to the start of 2017. I ended up fainting in the shower when the pains started (never fainted in my life). I thought ok this is silly I need to do something about this. And there starts the GP battle. Back and forth to see totally dismissive drs whose only solution was Mefanamic acid. As the year has gone on my periods have become totally irregular (always been pretty much 4 weekly prior). I now get pain when I’m not menstruating (like a burning searing hot pain in my pelvis and lower back - gets worse when sitting/certain lying positions. Back in September it got so bad I ended up in A&E. They sent me home after giving me pain relief. The pain continued and was unbearable. Luckily I work for a dr (not gynae) and she saw how much I was struggling so admitted me for tests. Had an ultrasound and CT which showed nothing. I have subsequently found a great GP who referred me to a gynae specialist (also endo specialist) and he’s listed me for laparoscopy. I’m still in pain daily and just trying to hold out until I get my date.

I guess my question is, has anyone else had negative scans but gone on to have endometriosis diagnosed at laparoscopy? The only comment really made by the surgeon was that my uterus had reduced mobility on pelvic exam. I obviously would rather not have endo (wouldn’t anyone?!) but also the prospect of not getting answers is upsetting. I’m sure many people feel this way?

Thanks for reading x

[Rachiet1987]

Sorry to hear you’ve had a rough time of things!

I had lots of clear tests/scans (ultrasound, ct and mri) before having a lap to be diagnosed with endo.

Was nice to finally get some answers as to what was wrong with me and have a proper plan put in place for when I have flare ups.

Fingers crossed you get some answers soon xx

[helen87 in reply to Rachiet1987]

Thank you so much for your reply. It’s reassuring that others have been in this position. Hopefully I won’t have to wait too long for my lap and finally get some answers too! xx

[SarahMia227]

Hiya,

I'm sorry to hear what you're going through.

I had a transvaginal scan and an ultrasound - both came back negative. I then had a laparoscopy, and was diagnosed with endometriosis.

I was told at the time that endometriosis is really hard to diagnose by scan, so just because it hasn't come up, doesn't mean they won't find it through a laparoscopy.

I felt that way too - I have a family history of endometriosis (grandma, mum and sister) so I was expecting it. Obviously I didn't want to be diagnosed, but it's a relief knowing at least what it is.

Sarah x

[helen87 in reply to SarahMia227]

Thank you for sharing your experience with me.

I’m just so fed up of being in pain. Feel like I’ve completely changed from who I used to be. I feel like at least if it is endometriosis, something can hopefully be done so that I’m not suffering all the time.

With so many negative tests, at times I’ve started to think I’m going mad and even considered that maybe the pain is all in my head. It’s an awful feeling but trying to stay positive that I’m now on the right track to answers.xx