Advice on diagnosing with ultra sound - Endometriosis UK

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Advice on diagnosing with ultra sound

Sarahkaye profile image
17 Replies

Hi,

I'm havering an ultra sound next week and wondered if anyone had ever had any endo or adenomyosis diagnosed with just an ultra sound?

Can anyone recomend giving any specific direction to the sonographer? I'm going to an antenatal ultra sound centre, so unsure of the knowledge they will have! I have a tilted uterus and unsure if they will be able to identify this, as they only look from an ariel view.

Is it best to request an MRI, has anyone requested this following a clear ultra sound? I'm unsure how much to push for treatment before they start saying its 'all in my head' !!!!!!!

So many questions I know, but I'm trying to prepare myself for the next step, as I don't hold out much hope with the ultra sound having had them before!

Any advice or experience would be great,

Sarah

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Sarahkaye profile image
Sarahkaye
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17 Replies
Retti profile image
Retti

I want an MRI done & been fobbed off so far. I think adeno can be shown on ultrasounds but not sure about endo, was told only a laparoscopy can do that. Waiting for my ultrasound date to come through and when I go I'm going to ask them to look at everything in my pelvis/abdo but I know with all my symptoms an MRI would be clearer and cross off lots of things! I hear MRI scans cost alot more than ultrasounds for the NHS, even looked into a private one but they cost a fortune! If my results from scan come back clear I dont know what to do, already been asked 'is it in your head' sick of hearing it! I will be pushing for an MRI scan but not hopefull ill get one. Hope you get some answers soon too!

Xx

Sarahkaye profile image
Sarahkaye in reply to Retti

Sounds like a lot if us are in the same boat Retti! Hope you get help soon. 😉

angelyn profile image
angelyn

Hey there.

I had ultrasound which showed nothing.

I had MRI which shows endo in ovaries and missed all the endo i had elsewhere.An MRI can show adenomyosis though. I think mri is best way to diagnose adenomyosis.

During my lap they found endo on bladder,pouch of douglas,uterovesical lining. None of those showed on scan.

Lap is the best way to diagnose. Sometimes scans can show some stuff like cysts ect, but docs should never say to you that "you don't have endo cos your scan is clear". Only way to rule out endo is lap.

Even then, they should take biopsies during the lap as not all endo can be seen with the naked eye. In addition,finding all the endo depends on the skill of your surgeon. Most of my endo was missed during my first lap.

To summarise - no one can tell you that you don't have endo unless a lap was done. Even then endo may have been missed.

hope this helps

Xx

Sarahkaye profile image
Sarahkaye in reply to angelyn

Thanks angelyn. 😁

Woodfield78 profile image
Woodfield78

Hi I have just had a ultra sound today and they picked up nothing! I am not awaiting to be referred for key hole surgery, ultra sounds don't pick up endo.

Xx

Sarahkaye profile image
Sarahkaye in reply to Woodfield78

That's what I thought woodfield 78. Have to go through scan to get an MRI though, so they can rule other stuff out! Its a waiting game. 😒 Thanks for your reply. 😁

Woodfield78 profile image
Woodfield78 in reply to Sarahkaye

Good luck! I was hoping to get referred to a specialist today but instead I have been fobbed off with the mini pill and been told to go back in 6 weeks! Hope all goes well for you xx

Sarahkaye profile image
Sarahkaye in reply to Woodfield78

That's hard, I was give marina coil and discharged! Now I'm right back where I started from waiting to see a consultant! Its helpful to get advice on here from others who have been there though. Good luck with the pill. Sarah😊

lisams88 profile image
lisams88

Hi

I had an internal and external scan, they can see endrometria cysts (chocolate cysts), they for a 4cm cyst on my ovary. They said they can't definitely confirm endo, but if you have these cysts, it is 99%.

Lisa xx

Sarahkaye profile image
Sarahkaye in reply to lisams88

Thanks Lisa, I have a feeling I am going to go through a long process again!

Sarah 😊

lisams88 profile image
lisams88 in reply to Sarahkaye

Me too. I feel so frustrated with it all. My gyno appt is next Weds so not long but I just want it confirming that I do or do not have it. Im going back to Uni in September to be a teacher and don't want to have to deal with the not knowing :( xx

Sarahkaye profile image
Sarahkaye

Mine is Wednesday too, best of luck to you.

Sarah 😊

lisams88 profile image
lisams88 in reply to Sarahkaye

You too 😊 xx

scribble1603 profile image
scribble1603

Hi,

It depends on where your endo is. Ovarian Endo can be picked up on ultrasound by an experienced sonographer performing an internal ultrasound. My internals show that I have a tilted womb, endometriomas in both ovaries and my left ovary is stuck to my womb.

The ESHRE patient guidelines have helpful information in relation to diagnosis. I have also recently watched a really interesting video by the pelvic pain association of Australia which has provided the best explanation of endo I've seen. It's by Dr Susan Evans. The lap footage shows why endo can't be picked up in other areas by ultrasound.

Good luck xx

Sarahkaye profile image
Sarahkaye in reply to scribble1603

Thanks scribble, Great advice. I will check out the video.

Sarah :)

Dollar1414 profile image
Dollar1414

All my scans showed nothing and mri scans often miss smaller endo , mine didn't even show up , lap is the way forward for definitive diagnosis x

Sarahkaye profile image
Sarahkaye

Thanks dollar1414,

Sarah😊

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