Endometriosis ultrasound?

[joniblue]

Hi everyone, I'm new here. I've been referred for an ultrasound for suspected Endo and I'm really nervous. Can anyone tell me what I should expect? I don't know anyone with endometriosis so I don't have anyone to talk to during my diagnosis journey. Any guidance at all would be so welcome

[Moon_maiden]

HiHope you aren’t feeling too bad at the moment 🙂

Don’t be surprised if endo doesn’t show on an ultrasound, it doesn’t really unless the person looking is experienced. Nothing showed on mine, only a little on MRI. Ovaries didn’t show either.

It’s good to have to rule out other things, it’s a guide in this respect. The gold standard is still a laparoscopy.

Try not to be nervous, there isn’t much to it, although this might be more due to needing an answer 😀

I’m sure you’ll get others responding and it’s a great forum to search. You’ll get lots of posts showing for ultrasound 🙂

[joniblue in reply to Moon_maiden]

Thanks so much for your reply, that’s really helpful! All the best <3 x

[Rose2001]

Hi your the first person iv spoken to about this i had a ultra sound a few years back for suspected endo they couldn’t find anything but the specialist told me to continue to write the pain down and come back to them it’s been a year now they’ve booked me in for another ultrasound they tried to tell me they don’t do laparoscopys anymore when that’s the only way to confirm it 🙄 they hardly pick it up on ultrasounds all i can say is just don’t be palmed off on just taking the birth control without being diagnosed x

[joniblue in reply to Rose2001]

Sorry you’ve had a hard time getting diagnosed love, thanks for the advice. I’m deffo going to try and avoid hormonal birth control for as long as I can - I’m already on sertraline and that messes with my head enough as it is! All the best xx

[Hidden]

Hi just to offer you some encouragement.Also Endometriosis does not show up on an ultrasound and the only way to find out is through a laparoscopy.

Who referred you?.

Please do your own research and insist on being referred to a specialist.Even GP,s and some gynaecologist don’t know enough about the disease and say oh you have painful periods here is a birth control..which sort of defeats the purpose especially if you want a baby.

The good news is having a scan might show up something else and you don’t have to worry about that bugger called endometriosis!.

[joniblue in reply to Hidden]

Hiya, it was my GP who referred me. I could only get an appointment with a male doctor which I wasn’t that pleased about but he took it seriously and referred me for the ultrasound very quickly. He did mention that a laparoscopy will have to follow the ultrasound but wants to rule out any other possible causes of endo symptoms first (cysts, etc..) I’ll carry on researching on my own - I definitely want to avoid going on hormonal birth control if I can! Thanks for your reply x x

[Ronsk]

Hi there , I've never heard of an endometriosis ultrasound, I was only aware this could be diagnosed through a laparoscopy. I had several ultrasound scans over the years and mine was never picked up. . However, they managed to pick up that I had cysts on my ovaries and that they looked (endo type) and fluid filled ? That's all a got from the scan other than having pcos also. Good luck x

[joniblue in reply to Ronsk]

Hiya, thanks for your reply. My GP says the ultrasound is a precursor to a laparoscopy just to rule out cysts etc.. All the best x x

[Mash11]

Hi

It’s unlikely it will show you will need an MRI scan. Write down your symptoms and ask to be referred to an endo specialist if possible. Everyone is right when they say the ultrasound can pick up cysts etc but no harm to have the ultrasound to see. Your symptoms are a clear indication that you might have endo so they will need to investigate further. Hope they can find out what what’s going on x

[joniblue in reply to Mash11]

Thanks so much. I’m keeping my fingers crossed that the ultrasound actually finds something that isn’t endo! I’ll be over the moon if it turns out to be something else. But let’s see. All the best x x

[monique7789]

Hey the same as the other ladies above. Unfortunately my endo did not show up on an ultrasound. The general advice is that it does not show up on an ultrasound and can only be seen via a laparoscopy...

[Ginz7]

I’ve had 4 ablations of endo and only once it has appeared on an ultrasound and it was just lucky placement of an ovarian cyst that helped showed it up but I know more often than not it doesn’t appear on scans so don’t be surprised if nothing comes up the scan itself is absolutely fine, slightly uncomfortable at best on the internal scan (which is a thinnish type probe that allows them to have a better look) but it’s usually over and done with really fast I have had endo for 10 years (I’m 25), diagnosed 4 and it’s taken a while to get everything under control but my main advice would be to listen to your body! Whilst the stigma around Gynae type problems is getting better, it’s still not great if you have the wrong doctor so don’t be afraid to speak up or seek a second opinion if you’re unhappy. I hope they find a simple solution to whatever your symptoms are but please drop me a message if you feel you have more questions I’m happy to be as open as you need me to be all the best x x x x

[joniblue in reply to Ginz7]

Thank you so so much x x x

[Dani6290]

Hi! It’s really great you’ve got to this point - even that’s an achievement in itself on the road to diagnosis 🙂

In terms of what to expect in the appointment, here’s a bit based on my experience - I’ve had 3 (for various reasons)!

- They’ll ask you to come with a full bladder (having drunk a litre of clear fluid the hour before the appointment time), so you’ll likely be bursting...!

- The room will likely be in low light, so they can see the screens better.

- First, they’ll explain how it’s all going to work, and make you feel at ease.

- You’ll then lie down for the external ultrasound. It’s just like you see on TV when pregnant folx get them - a bit of (cold!) gel, and then they press around on your lower tummy for a few minutes. It’s not uncomfortable apart from it making you need to wee!

- They’ll then let you wipe the gel off and pop to the loo to relieve yourself 🙌

- Then comes the internal ultrasound, which sounds much worse than it is - it’s waaay easier than a smear! You’ll need to take your bottoms off - they’ll leave you alone behind the curtain until your laid down and happy that you’re covered how you like.

- Again, they’ll explain everything, and when you’re ready they’ll insert the small camera wand. They lubricate it - it wasn’t painful for me personally.

- They’ll then move it around to get some images, and might have to push on your lower tummy a bit to help! This bit will take about 2-3mins, then they’ll leave you to get dressed!

And that’s it...! I prefer to go wearing a skirt/dress and tights myself, as I don’t like taking my trousers off for the second bit...!

I hope this helps a bit to set your mind at ease 🤗

[joniblue in reply to Dani6290]

Thankyou so much!! That’s really helpful - I had no idea that you need to have a full bladder wow! x x

[Cailleach in reply to joniblue]

The full bladder bit is the most difficult IMO! You need a full bladder to let them get a good view of the uterus. I have had a few ultrasounds and I prefer to get to the appointment early and then top up on the water once I’m there. The ultrasound is only very mildly uncomfortable, even the internal (vaginal) probe.

Best of luck.