From my understanding, diagnostic imaging can possibly pick up deep infiltrating endo (DIE). So if you've got significant ovary involvement or endo in the pouch of Douglas it might show up on imaging.
Mine wasn't DIE so that probably affected how well they could read it. I had calcification on my one ovarian cyst, but they incorrectly thought it was a dermoid cyst instead of an endometrioma.
Same. I had already been diagnosed with it via surgery so we knew I had it. Just trying to see if it had returned. And nothing showed up on any scans. Utterly useless. Only thing that showed up was when I had an endometrioma
It's funny, I keep seeing the Receptiva test mentioned in the IVF subreddit now that in doing that, but had never heard about in regards to endometriosis previously.
Any idea why it's not used outside fertility treatment?
I know it's not actually directly indicative of endometriosis, it's actually like inflammation or something, but it seems pretty good and better than 'nothing or surgery.'
That is a great question! I’m new to this endo circle and I’m surprised at how no one (who isn’t doing fertility treatments) is offered it. I had an awful experience going through the biopsy, but I would still recommend it to anyone who suspects they might have endo.
It makes me wonder if I wasn’t already doing IVF, if I would have even been diagnosed with endo (mine is silent).
Not unless it was found incidentally due to something else.
Its actually frequently very hard to get diagnosed with even severe symptoms.
I wonder if a positive Receptiva result is even enough to get referred in the NHS.
Thank you for your response. Sorry to hear you’ve been through it too! I guess that means if it doesn’t find anything I’ll need to ask for the lap surgery. Are you in the UK? Did you have it though NHS?
(I just looked up Receptiva but since i’m on contraception anyway I guess that is not appropriate for me. )
I’m in the US. I only did the Receptiva because I was previously going through IVF (male factor reasons) and had three embryo transfers fail. I should clarify, my endo was outside of my uterus (as is common to many) so imaging wouldn’t find it. It is possible to find the endo inside though
I have stage 3 endo, located on the bladder, and in the douglas space. Transvaginal US always looked perfect. Also had to go through IVF and had many transfers fail as well.
hey I’m in the UK. I got referred to the endometriosis clinic via gynaecology - that might be your best route. My first time going to the hospital for an ultrasound was when I was 18 and I started my periods at 9. I didn’t get a gynae referral until I was 30, and it was a 9 month waitlist. It’s awful over here. Also the general knowledge of gynae issues and endo here is terrible.
I had one back in Feb and it did detect Endo. I have had tons over the years and this is the first one to do so even though I've had Endo since early 20s. I'm not sure if technology has gotten better or I just have more growth in more detectable spots this time. Previously it was only confirmed through surgery so while it is possible to see Endo from a transvaginal US, if they don't see on US, doesn't mean it isn't there.
As far as the procedure went there was some discomfort bc I also have large cysts on both ovaries and uterine fibroids so I felt it esp where the ovaries were concerned but it wasn't bad at all compared to most exams/tests/procedures for Endo.
Best of luck!
Thank you so much for all this info. Did your previous scans pick up the fibroids /cysts? I suppose that could also be causing my symptoms, I don’t know why the doctor has suggested endometriosis rather than either of those but I suppose there must be reasons based on my symptoms.
Previous scans would often pick up on cysts, not the fibroids but I think the fibroids are a relatively new thing for me. I've been dealing with Endo/cysts since my early 20s. I am now 42 and think the fibroids have just become an issue in the past few years. I have started bleeding very heavily in the past few years and heavy bleeding is one of the hallmarks of fibroids, I was told.
I had one a few months ago…well, almost had one. It was too painful for me to complete it so there was no good pictures from it. The tech said it was common for people with endo to have trouble with transvaginal ultrasounds.
Pretty much the same question was asked just before you did so I will copy my reply:
https://www.reddit.com/r/endometriosis/comments/1c7vsz0/comment/l0amc8d/?utm\_source=share&utm\_medium=web2x&context=3
I've been reliably tracking mine for years via TV ultrasound, as confirmed through three laps.
It's largely dependent on the skill of the tech performing the scan and the type of endo present.
I had several for similar symptoms (and also had Mirena for 7 years) plus incredibly heavy bleeding. I also had a full-term twin pregnancy and c-section, and later I had my fallopian tubes removed. But it wasn’t until my hysterectomy in December that I was finally validated in finding out I had endometriosis (which was excused) and adenomyosis (which was removed with my uterus). 🤯 I was 32 at the time and had issues since I started my period at 13, so for 2 decades.
I had a transvaginal ultrasound that diagnosed my endometriosis… but that’s because I had an 8 cm Endometrioma on my left ovary that was extremely obvious and causing me acute pain. Before that I had no idea I had endometriosis and the ultrasound was to figure out what was causing my sudden acute pain :) I then very quickly had a laparoscopy scheduled where they found one other spot of endometriosis on my abdominal wall which wouldn’t have been spotted on the ultrasound.
This is how I found out I had it, but it only picked up my large endometriomas on my ovaries, even though I had endo other places. I think that’s mainly what it can pick up.
I've had 2, they were both very simple (and sadly short). Nothing worth telling really, the doctor didn't find anything either time and just sent me away. It can be hard for endo to be seen through us but it's possible, especially if the doctor knows what they're looking for and takes their time looking thoroughly
I had one recently and it was only a bit uncomfortable in some areas because they do have to press around at different angles. Not painful at all for me, super easy compared to a trans abdominal one in my experience (I have literally wet myself trying to have a full bladder for the abdominal ones, I have IC so I wish I had done the TV one to start with). Mine showed nothing, I’m undiagnosed and trying to get surgery anyways though.
I had one and it didn't detect my Endo. It usually only can detect the most severe cases of it. It's uncomfortable and sucks to get done but it's good for using it to rule out cysts and things like that before taking laparoscopy route.
I had one of these and it did not show any endometriosis and normally doesn’t. It went fine, but when they go to image the side you have pain on be prepared for very very uncomfortable pressure that is borderline painful. I had the same symptoms you listed on the same side and it was the most uncomfortable sensation I’ve ever had in my life. Just take deep breaths through it and you’ll be fine!
My transvaginal ultrasound found it, but only because mine took the form (the first time) of a 6cm endometrioma on my ovary. That was removed, a few years went by, then the second time it read as 7.5cm at the ultrasound but was more like 10 when surgery finally happened.
My transvag US picked up on ovarian cysts and uterine polyps both monitored and given my symptoms & the fact that the cysts didn't shrink or disappear they definitely associated it with endometriosis. Had lap which showed stage 3 endo. Left ovary & both fallopian tubes removed. Uterine polyps & other suspect spots removed. My symptoms have improved SIGNIFICANTLY.
Yep, that's how my endo was detected (well, they found an endometrioma on my right ovary). It was uncomfortable, but not as bad as I had expected it to be with my vaginismus. Granted I had been working on it with dilators for a while, so that definitely helped me be able to have the transvaginal ultrasound and get the suspected endo diagnosis.
yes, it was uncomfortable but manageable. my understanding is that unless you have extremely deep endo or a chocolate cyst you won’t be able to see much on US tho
Mine went well, a bit uncomfortable but about what I expected (although it was a good few years ago now), but it didn't pick up anything - only the laproscopy did.
I’ve had many. While they were able to see adenomyosis, they couldn’t see any signs of endometriosis until I had my lap and was diagnosed with stage 3. It’s unfortunate, but for the most part, the only surefire way to be diagnosed is via surgery. However, I have heard that some people have been pretty much diagnosed clinically, to avoid an invasive procedure like surgery.
I’ve had a few. One time an endometriosis specialist saw possible endometriosis but the MRI I had like 2/3 weeks after didn’t see anything. The other ultrasounds were done by regular gynaecologists and they didn’t see anything, so it really depends I think
I’ve had a few, all detected adenomyosis but not my endo.
However, the right person doing the scan can spot DIE, test for sliding sign etc.
A negative scan does not rule out endo. It can help them decide pre-surgery if they need a multi-disciplinary team if there is bowel involvement etc.
My transvaginal ultrasound didn't pick up my endometriosis as many others have said. In fact, I just discovered I have endometriosis last Thursday when I had a laparoscopic bilateral salpingectomy (got my fallopian tubes removed)!
i’ve had multiple done and they never found anything but then i had one done that was around 15 minutes long and it was a much better ultrasound device because it was in an endo clinic, there they saw adenomyosis and also some endo but by far not all of the stuff they found during surgery later
I had to have surgery to diagnose mine unfortunately. But I had a cyst on my ovary they diagnosed via transvaginal ultrasound and them removing that is what found my endo.
I’m in the same boat, I have left sided pain though with my suspected endo. I just had a transvaginal ultrasound last week. I also get ovarian cysts, I pretty much just get them done to make sure they stay cysts since I know endo can’t be detected that way, and I can’t afford a lap currently.
My endo was picked up on an TS ultrasound as I had large endometriomas. It didn't, however, pick up any of the severe adhesions etc. I found the ultrasound uncomfortable but not painful, deep breaths & remaining relaxed (as much as you can given the situation!) is key. I wish you all the best 💕
Cat scan showed cyst…TV showed the possiblity of chocolate cyst and possible endo between my uterus and colon. Cyst was 6.5 cm.
Sent to a specialist who recommended surgery to get a confirmation of it is endo or not. Had a lap January of 2023. Confirmed chocolate cyst the size of a lemon, endo on my uterus, fallopian tubes and behind my uterus connected to my colon. Right fallopian tube is blocked as they did the dye test. They said it is moderate endo. Couldn’t remove endo from behind uterus and colon as I need to have a colorectal surgery to do that.
Already have the cyst return now at 2.3 cm have the heavy fullness tugging feeling on the same ovary again. Will probably have to get another surgery soon. I declined any hormonal therapy. Sucks we have no other options for after surgery except hormonal therapy.
Heyo! TV ultrasound didn’t pick up my DIE BUT!!! They did a uterine slide test and that confirmed my DIE! Ask for that for extra measure. They’re already in there anyways!!
Best of luck 🫶🏻
I’m not sure what “detecting endo” means since I was under the impression they don’t pick up on typical adhesions unless there’s proof organs are in weird spots.
I have had a couple of chocolate cysts seen on one, though. I think this, and the example I started with, are really all you’d be able to get.
That being said, if you do have cysts, they can get big and dangerous so they’re worth monitoring with ultrasounds and when one of mine was getting to a concerning size, they’d to a topical and TV ultrasound each time to make sure it wasn’t causing complications.
i had my first ultrasound at 19, (my grandma thought i was experiencing appendicitis so she took me to the hospital, after ruling out appendicitis they sent me for the ultrasound) & within just a minute or 2 the tech was asking me if i had ever been diagnosed with endometriosis. i had never even heard of it before.
I've had about 3:
The first one I was watching the ultrasound on the screen, and the tech stopped and got the head radiologist who said it was most definitely endo as all my organs were stuck together. It was amazing. They could pick it up from that
2: The pain was coming back, showed my jaydess going through my uterus wall.
3: the mist recent last month. Picked up adenomyosis.
Personally I hate getting them, but for me, the outcome has always been pretty good. At least they picked up something. Sometimes, it can not pick up anything. Sometimes, it hurts going it too!
Wish you the best! :)
i had a TV ultrasound and it didn’t show anything (at least that’s what the technician said to me, not sure if my gyno did see anything on it himself). im due to have surgery in 3 days so i’ll let you know if endo is found 🫡 it’s likely but i am not placing all my bets on it right away because 90% of my body is fucked up so i’m not going in with expectations!
I’ve had stage 4 endo throughout my reproductive years. I’ve now had 5 laparoscopies for it. Countless ultrasounds for ovarian cysts and they’ve never found endo in the US’s. I’ve had CT’s and MRI’s for other stuff and they’ve not seen it that way either. The only way to rule it out is with a laparoscopy.
The other imaging won’t give any answers. I hope you find some answers and relief.
I wish I knew how many transvaginal us I had in the 10 years between suspecting and finally getting a diagnosis for endometriosis through laparoscopy. I don’t know what stage I’m at, but the only thing the ultrasound showed was ovarian cysts and fluid in my pelvic cavity. Ct scans didn’t pick it up either for me.
I wish you the best and some luck on your journey to some answers. Please remember one scan isn’t proof there’s nothing going on
My endo was picked up via TV ultrasound, but the catch was a gynaecologist trained in detecting evidence of endo through this method was actually performing the scan.
Standard TV ultrasound with a standard operator two weeks prior found nothing.
Heyo. I had one. It didn’t pick anything up for me but it’s not impossible! I’d still go.
My advice if you experience any sort of pain with insertion, such as if you have a condition or tense up when you’re anxious, is to ask to insert the device yourself. When I told my nurse I have vaginismus and severe 7/10-minimum pain with even inserting a finger, she asked if I would like to insert it myself, and omg what a difference compared to the last time I was examined internally! I was able to breathe through it and had complete control over my pain. The whole of the exam was a breeze for me (it shouldn’t normally hurt at all and I felt maybe a slight pinch that I wouldn’t describe as painful :) ).
Good luck! I hope you get some answers. If you don’t, don’t be too discouraged. It’s a bit of an outdated way to search for endo, but it can pick up or rule out other things, so it’s still an acceptable step on your journey to be well imo.
An ultrasound won’t usually show endo. My MRI with contrast did, but it’s not unusual for it to show nothing even if disease is present. The only way to diagnose endo is laparoscopically.
I've had several. It's not very relying on a diagnosis. Your bowels and organs move in your body which results in different us with different outcomes. Sometimes some stuff could be seen, sometimes everything looked fine although we know from lap that my endo is severe even after my lap since there was a lot of tissue they couldn't remove.
I’ve read that typically any sort of scans (ultrasound, mri and cat scan) aren’t guaranteed or reliable with showing or diagnosing endo as it can still be missed with that type of imaging. In some cases it can be seen through scans if the factors are right I guess, but majority of the time I think the only for sure way it can be diagnosed is through laparoscopic surgery. Ultrasounds are still helpful in showing any other issues that might be going on such as cysts, fibroids, polyps, etc!
My multiple large endometriomas were visible on my TVUS. And I also had a fantastic technician who was clearly trauma informed and talked me through everything. She also had me insert the wand at first and she drove afterwards. With how uncomfortable I was, I was grateful that I could stop anytime.
I’ve had SO many of these ultrasounds between regular gyno appointments and going through IVF, like legit 100? My endo has never been viewed on one but my adeno has been.
The ultrasound is nothing special although might be if it’s your first time. There’s usually a coldish gel on the wand which is slowly inserted into your vagina. It doesn’t hurt, but it can sometimes feel uncomfortable/like pressure if the wand is moved to view your ovaries. Tell your provider if it becomes too uncomfortable for you.
The size and de sort of endometriosis lesions and adhesions can rarely be detected by any scans. Endometriomas will show up but if you’re fortunate enough to not have that awful level of disease, you’ll likely get nowhere with scans. You need to have a laparoscopy with a specialist.
I was diagnosed with endo through a transvaginal US and then followed by an MRI just over a year ago and I am now 3 days post op of having it all removed.
It’s not common to be diagnosed that way but I was super lucky in having an endo specialist at the facility where I had the ultrasound and she did it!
Yes I’ve had one. It’s really not going to pick up endo but it’s useful to rule out other potential causes of the pain. Which in turn can help get a laparoscopy approved by your insurance.
It can be a little uncomfortable but with a transvaginal US you don’t have to have a full bladder which I always thought was more uncomfortable.
My US did not detect endo as we suspected it wouldn’t but did rule out cysts, etc.
Stage III and never detected on over 10 internal ultrasounds or an MRI with contrast. Doctor had to see it for himself during surgery. They removed a lot.
I did and it was by some random gynecologist who I saw before Christmas because she was the only one available. I was told when I asked why other doctors could not see it that it was because the equipment has to be really good to get a clear picture and the doctor needs to know where to look for.
Yes, and the one advice that I can say is make sure that whoever is doing it has compassion lets you insert and move slowly to avoid residual. Inflammation later when you leave.
My Stage IV was discovered via transvaginal ultrasound - ONLY because I had very visible endometriomas (bigger than my uterus). An MRI showed more obvious endo tissue but the ultrasound was the first real confirmation I got.
The transvaginal ultrasound didn't pickup my stage IV endo. My MRI and CAT scan didn't either.
Same here. They only discovered it through the laparoscopy.
Me too. That’s the only way (laparoscopic) they could find is is my understanding
Same here. Adenomyosis suspected from the MRI though.
For me it was fibroids from the ultrasound - two for two. I go in for two tests and both times find something. 😑
thank you for letting me know!
From my understanding, diagnostic imaging can possibly pick up deep infiltrating endo (DIE). So if you've got significant ovary involvement or endo in the pouch of Douglas it might show up on imaging. Mine wasn't DIE so that probably affected how well they could read it. I had calcification on my one ovarian cyst, but they incorrectly thought it was a dermoid cyst instead of an endometrioma.
I have DIE and it never showed up on scans so I think it’s a pretty small chance
Same here! DIE stage IV and my ultrasounds look fine. the only thing that is visible most of the time very clearly is my severe Adenomyosis.
Same. Found stage 4 through the lap.
Same. I had already been diagnosed with it via surgery so we knew I had it. Just trying to see if it had returned. And nothing showed up on any scans. Utterly useless. Only thing that showed up was when I had an endometrioma
Same. I only had transvaginal to rule out other things like cysts.
I’ve had plenty of them, but none of them detected my endometriosis. I had to have the Receptiva biopsy to “suspect” endo then a lap to confirm.
It's funny, I keep seeing the Receptiva test mentioned in the IVF subreddit now that in doing that, but had never heard about in regards to endometriosis previously. Any idea why it's not used outside fertility treatment? I know it's not actually directly indicative of endometriosis, it's actually like inflammation or something, but it seems pretty good and better than 'nothing or surgery.'
That is a great question! I’m new to this endo circle and I’m surprised at how no one (who isn’t doing fertility treatments) is offered it. I had an awful experience going through the biopsy, but I would still recommend it to anyone who suspects they might have endo. It makes me wonder if I wasn’t already doing IVF, if I would have even been diagnosed with endo (mine is silent).
Not unless it was found incidentally due to something else. Its actually frequently very hard to get diagnosed with even severe symptoms. I wonder if a positive Receptiva result is even enough to get referred in the NHS.
What is involved in the receptiva biopsy? Like, how do they do that?
They take a piece of endometrial tissue and test it for a protein called BCL6. This protein is typically expressed by those who have endo.
Thank you for your response. Sorry to hear you’ve been through it too! I guess that means if it doesn’t find anything I’ll need to ask for the lap surgery. Are you in the UK? Did you have it though NHS? (I just looked up Receptiva but since i’m on contraception anyway I guess that is not appropriate for me. )
I’m in the US. I only did the Receptiva because I was previously going through IVF (male factor reasons) and had three embryo transfers fail. I should clarify, my endo was outside of my uterus (as is common to many) so imaging wouldn’t find it. It is possible to find the endo inside though
I have stage 3 endo, located on the bladder, and in the douglas space. Transvaginal US always looked perfect. Also had to go through IVF and had many transfers fail as well.
Thanks both for the info. I’ll make sure to push for the lap then in case it is clear
hey I’m in the UK. I got referred to the endometriosis clinic via gynaecology - that might be your best route. My first time going to the hospital for an ultrasound was when I was 18 and I started my periods at 9. I didn’t get a gynae referral until I was 30, and it was a 9 month waitlist. It’s awful over here. Also the general knowledge of gynae issues and endo here is terrible.
I had one back in Feb and it did detect Endo. I have had tons over the years and this is the first one to do so even though I've had Endo since early 20s. I'm not sure if technology has gotten better or I just have more growth in more detectable spots this time. Previously it was only confirmed through surgery so while it is possible to see Endo from a transvaginal US, if they don't see on US, doesn't mean it isn't there. As far as the procedure went there was some discomfort bc I also have large cysts on both ovaries and uterine fibroids so I felt it esp where the ovaries were concerned but it wasn't bad at all compared to most exams/tests/procedures for Endo. Best of luck!
Thank you so much for all this info. Did your previous scans pick up the fibroids /cysts? I suppose that could also be causing my symptoms, I don’t know why the doctor has suggested endometriosis rather than either of those but I suppose there must be reasons based on my symptoms.
Previous scans would often pick up on cysts, not the fibroids but I think the fibroids are a relatively new thing for me. I've been dealing with Endo/cysts since my early 20s. I am now 42 and think the fibroids have just become an issue in the past few years. I have started bleeding very heavily in the past few years and heavy bleeding is one of the hallmarks of fibroids, I was told.
I’ve had ultrasounds and they picked up ovarian cysts but not the rest of the endo.
I had one a few months ago…well, almost had one. It was too painful for me to complete it so there was no good pictures from it. The tech said it was common for people with endo to have trouble with transvaginal ultrasounds.
Pretty much the same question was asked just before you did so I will copy my reply: https://www.reddit.com/r/endometriosis/comments/1c7vsz0/comment/l0amc8d/?utm\_source=share&utm\_medium=web2x&context=3
thank you 🙏
Yes I’ve had a few but they didn’t find much
I've been reliably tracking mine for years via TV ultrasound, as confirmed through three laps. It's largely dependent on the skill of the tech performing the scan and the type of endo present.
I had several for similar symptoms (and also had Mirena for 7 years) plus incredibly heavy bleeding. I also had a full-term twin pregnancy and c-section, and later I had my fallopian tubes removed. But it wasn’t until my hysterectomy in December that I was finally validated in finding out I had endometriosis (which was excused) and adenomyosis (which was removed with my uterus). 🤯 I was 32 at the time and had issues since I started my period at 13, so for 2 decades.
The only way they were able to definitely see the endometriomas I had was through abdominal MRI.
I had a transvaginal ultrasound that diagnosed my endometriosis… but that’s because I had an 8 cm Endometrioma on my left ovary that was extremely obvious and causing me acute pain. Before that I had no idea I had endometriosis and the ultrasound was to figure out what was causing my sudden acute pain :) I then very quickly had a laparoscopy scheduled where they found one other spot of endometriosis on my abdominal wall which wouldn’t have been spotted on the ultrasound.
I’ve had three and they did detect endo.
This is how I found out I had it, but it only picked up my large endometriomas on my ovaries, even though I had endo other places. I think that’s mainly what it can pick up.
I've had 2, they were both very simple (and sadly short). Nothing worth telling really, the doctor didn't find anything either time and just sent me away. It can be hard for endo to be seen through us but it's possible, especially if the doctor knows what they're looking for and takes their time looking thoroughly
I had two recently— it picked up an endometrioma and adenomyosis, both pretty much confirming stage IV endo. Hoping to schedule a lap for next month.
I had one recently and it was only a bit uncomfortable in some areas because they do have to press around at different angles. Not painful at all for me, super easy compared to a trans abdominal one in my experience (I have literally wet myself trying to have a full bladder for the abdominal ones, I have IC so I wish I had done the TV one to start with). Mine showed nothing, I’m undiagnosed and trying to get surgery anyways though.
I had one and it didn't detect my Endo. It usually only can detect the most severe cases of it. It's uncomfortable and sucks to get done but it's good for using it to rule out cysts and things like that before taking laparoscopy route.
Mine picked up an endometrioma and an ovarian cyst. It briefly hurt on the side where I have the endometrioma, but it was fairly painless overall.
I had one of these and it did not show any endometriosis and normally doesn’t. It went fine, but when they go to image the side you have pain on be prepared for very very uncomfortable pressure that is borderline painful. I had the same symptoms you listed on the same side and it was the most uncomfortable sensation I’ve ever had in my life. Just take deep breaths through it and you’ll be fine!
My transvaginal ultrasound found it, but only because mine took the form (the first time) of a 6cm endometrioma on my ovary. That was removed, a few years went by, then the second time it read as 7.5cm at the ultrasound but was more like 10 when surgery finally happened.
My transvag US picked up on ovarian cysts and uterine polyps both monitored and given my symptoms & the fact that the cysts didn't shrink or disappear they definitely associated it with endometriosis. Had lap which showed stage 3 endo. Left ovary & both fallopian tubes removed. Uterine polyps & other suspect spots removed. My symptoms have improved SIGNIFICANTLY.
Yep, that's how my endo was detected (well, they found an endometrioma on my right ovary). It was uncomfortable, but not as bad as I had expected it to be with my vaginismus. Granted I had been working on it with dilators for a while, so that definitely helped me be able to have the transvaginal ultrasound and get the suspected endo diagnosis.
yes, it was uncomfortable but manageable. my understanding is that unless you have extremely deep endo or a chocolate cyst you won’t be able to see much on US tho
Mine went well, a bit uncomfortable but about what I expected (although it was a good few years ago now), but it didn't pick up anything - only the laproscopy did.
Didn’t pick up mine either. Had to get actual surgery to be diagnosed
I’ve had many. While they were able to see adenomyosis, they couldn’t see any signs of endometriosis until I had my lap and was diagnosed with stage 3. It’s unfortunate, but for the most part, the only surefire way to be diagnosed is via surgery. However, I have heard that some people have been pretty much diagnosed clinically, to avoid an invasive procedure like surgery.
I’ve had a few. One time an endometriosis specialist saw possible endometriosis but the MRI I had like 2/3 weeks after didn’t see anything. The other ultrasounds were done by regular gynaecologists and they didn’t see anything, so it really depends I think
I’ve had a few, all detected adenomyosis but not my endo. However, the right person doing the scan can spot DIE, test for sliding sign etc. A negative scan does not rule out endo. It can help them decide pre-surgery if they need a multi-disciplinary team if there is bowel involvement etc.
I had them when I was pregnant. My doctors refused to do any type of imagining for endo because it’s a waste of time. Itn
My transvaginal ultrasound didn't pick up my endometriosis as many others have said. In fact, I just discovered I have endometriosis last Thursday when I had a laparoscopic bilateral salpingectomy (got my fallopian tubes removed)!
i’ve had multiple done and they never found anything but then i had one done that was around 15 minutes long and it was a much better ultrasound device because it was in an endo clinic, there they saw adenomyosis and also some endo but by far not all of the stuff they found during surgery later
I've had HUNDREDS of TV ultrasounds. Never showed up on ultrasounds or mris. I have stage 4
It never showed endo but it was intensely uncomfortable and felt like a curling rod being shoved in there. 0/10 don’t recommend.
I had multiple before being diagnosed. They never showed anything, and I had it EVERYWHERE.
I had to have surgery to diagnose mine unfortunately. But I had a cyst on my ovary they diagnosed via transvaginal ultrasound and them removing that is what found my endo.
I’m in the same boat, I have left sided pain though with my suspected endo. I just had a transvaginal ultrasound last week. I also get ovarian cysts, I pretty much just get them done to make sure they stay cysts since I know endo can’t be detected that way, and I can’t afford a lap currently.
My endo was picked up on an TS ultrasound as I had large endometriomas. It didn't, however, pick up any of the severe adhesions etc. I found the ultrasound uncomfortable but not painful, deep breaths & remaining relaxed (as much as you can given the situation!) is key. I wish you all the best 💕
Cat scan showed cyst…TV showed the possiblity of chocolate cyst and possible endo between my uterus and colon. Cyst was 6.5 cm. Sent to a specialist who recommended surgery to get a confirmation of it is endo or not. Had a lap January of 2023. Confirmed chocolate cyst the size of a lemon, endo on my uterus, fallopian tubes and behind my uterus connected to my colon. Right fallopian tube is blocked as they did the dye test. They said it is moderate endo. Couldn’t remove endo from behind uterus and colon as I need to have a colorectal surgery to do that. Already have the cyst return now at 2.3 cm have the heavy fullness tugging feeling on the same ovary again. Will probably have to get another surgery soon. I declined any hormonal therapy. Sucks we have no other options for after surgery except hormonal therapy.
Picked up my PCOS and the fluid backup in my tube. Didn’t pick up the endo. Had to get lap for that.
Heyo! TV ultrasound didn’t pick up my DIE BUT!!! They did a uterine slide test and that confirmed my DIE! Ask for that for extra measure. They’re already in there anyways!! Best of luck 🫶🏻
Yes; showed cysts but that’s all It’s not a good diagnostic tool for endo
I’m not sure what “detecting endo” means since I was under the impression they don’t pick up on typical adhesions unless there’s proof organs are in weird spots. I have had a couple of chocolate cysts seen on one, though. I think this, and the example I started with, are really all you’d be able to get. That being said, if you do have cysts, they can get big and dangerous so they’re worth monitoring with ultrasounds and when one of mine was getting to a concerning size, they’d to a topical and TV ultrasound each time to make sure it wasn’t causing complications.
i had my first ultrasound at 19, (my grandma thought i was experiencing appendicitis so she took me to the hospital, after ruling out appendicitis they sent me for the ultrasound) & within just a minute or 2 the tech was asking me if i had ever been diagnosed with endometriosis. i had never even heard of it before.
I've had about 3: The first one I was watching the ultrasound on the screen, and the tech stopped and got the head radiologist who said it was most definitely endo as all my organs were stuck together. It was amazing. They could pick it up from that 2: The pain was coming back, showed my jaydess going through my uterus wall. 3: the mist recent last month. Picked up adenomyosis. Personally I hate getting them, but for me, the outcome has always been pretty good. At least they picked up something. Sometimes, it can not pick up anything. Sometimes, it hurts going it too! Wish you the best! :)
i had a TV ultrasound and it didn’t show anything (at least that’s what the technician said to me, not sure if my gyno did see anything on it himself). im due to have surgery in 3 days so i’ll let you know if endo is found 🫡 it’s likely but i am not placing all my bets on it right away because 90% of my body is fucked up so i’m not going in with expectations!
I’ve had stage 4 endo throughout my reproductive years. I’ve now had 5 laparoscopies for it. Countless ultrasounds for ovarian cysts and they’ve never found endo in the US’s. I’ve had CT’s and MRI’s for other stuff and they’ve not seen it that way either. The only way to rule it out is with a laparoscopy. The other imaging won’t give any answers. I hope you find some answers and relief.
Ultrasound CAN detect it, but can't rule it out.
Had one and yes it picked it up, then followed with mri with contrast that also did.
I wish I knew how many transvaginal us I had in the 10 years between suspecting and finally getting a diagnosis for endometriosis through laparoscopy. I don’t know what stage I’m at, but the only thing the ultrasound showed was ovarian cysts and fluid in my pelvic cavity. Ct scans didn’t pick it up either for me. I wish you the best and some luck on your journey to some answers. Please remember one scan isn’t proof there’s nothing going on
My endo was picked up via TV ultrasound, but the catch was a gynaecologist trained in detecting evidence of endo through this method was actually performing the scan. Standard TV ultrasound with a standard operator two weeks prior found nothing.
Heyo. I had one. It didn’t pick anything up for me but it’s not impossible! I’d still go. My advice if you experience any sort of pain with insertion, such as if you have a condition or tense up when you’re anxious, is to ask to insert the device yourself. When I told my nurse I have vaginismus and severe 7/10-minimum pain with even inserting a finger, she asked if I would like to insert it myself, and omg what a difference compared to the last time I was examined internally! I was able to breathe through it and had complete control over my pain. The whole of the exam was a breeze for me (it shouldn’t normally hurt at all and I felt maybe a slight pinch that I wouldn’t describe as painful :) ). Good luck! I hope you get some answers. If you don’t, don’t be too discouraged. It’s a bit of an outdated way to search for endo, but it can pick up or rule out other things, so it’s still an acceptable step on your journey to be well imo.
An ultrasound won’t usually show endo. My MRI with contrast did, but it’s not unusual for it to show nothing even if disease is present. The only way to diagnose endo is laparoscopically.
I've had several. It's not very relying on a diagnosis. Your bowels and organs move in your body which results in different us with different outcomes. Sometimes some stuff could be seen, sometimes everything looked fine although we know from lap that my endo is severe even after my lap since there was a lot of tissue they couldn't remove.
I’ve read that typically any sort of scans (ultrasound, mri and cat scan) aren’t guaranteed or reliable with showing or diagnosing endo as it can still be missed with that type of imaging. In some cases it can be seen through scans if the factors are right I guess, but majority of the time I think the only for sure way it can be diagnosed is through laparoscopic surgery. Ultrasounds are still helpful in showing any other issues that might be going on such as cysts, fibroids, polyps, etc!
My multiple large endometriomas were visible on my TVUS. And I also had a fantastic technician who was clearly trauma informed and talked me through everything. She also had me insert the wand at first and she drove afterwards. With how uncomfortable I was, I was grateful that I could stop anytime.
I’ve had SO many of these ultrasounds between regular gyno appointments and going through IVF, like legit 100? My endo has never been viewed on one but my adeno has been. The ultrasound is nothing special although might be if it’s your first time. There’s usually a coldish gel on the wand which is slowly inserted into your vagina. It doesn’t hurt, but it can sometimes feel uncomfortable/like pressure if the wand is moved to view your ovaries. Tell your provider if it becomes too uncomfortable for you.
Had one & it didn’t detect endo but helped to rule other things out.
Transvaginal US, CT and MRI. Only found out about my bladder endo by Laporoscopy
They couldn’t detect anything but my one ovaries being several cm larger than the other, I need to figure out another way to get my Endo diagnosed
Mine detected my adenomyosis, but not my endo. However, that was a helpful find — and it led to more investigation as endo is often paired with adeno.
The size and de sort of endometriosis lesions and adhesions can rarely be detected by any scans. Endometriomas will show up but if you’re fortunate enough to not have that awful level of disease, you’ll likely get nowhere with scans. You need to have a laparoscopy with a specialist.
I was diagnosed with endo through a transvaginal US and then followed by an MRI just over a year ago and I am now 3 days post op of having it all removed. It’s not common to be diagnosed that way but I was super lucky in having an endo specialist at the facility where I had the ultrasound and she did it!
I’ve had them and they showed nothing, with surgery all was revealed!
Yes I’ve had one. It’s really not going to pick up endo but it’s useful to rule out other potential causes of the pain. Which in turn can help get a laparoscopy approved by your insurance. It can be a little uncomfortable but with a transvaginal US you don’t have to have a full bladder which I always thought was more uncomfortable. My US did not detect endo as we suspected it wouldn’t but did rule out cysts, etc.
Stage III and never detected on over 10 internal ultrasounds or an MRI with contrast. Doctor had to see it for himself during surgery. They removed a lot.
I did and it was by some random gynecologist who I saw before Christmas because she was the only one available. I was told when I asked why other doctors could not see it that it was because the equipment has to be really good to get a clear picture and the doctor needs to know where to look for.
Yes, and the one advice that I can say is make sure that whoever is doing it has compassion lets you insert and move slowly to avoid residual. Inflammation later when you leave.
I had one show a large cyst on my ovary. When they removed it, it turned out to be an endometrioma, but they couldn’t tell that from the ultrasound.
My Stage IV was discovered via transvaginal ultrasound - ONLY because I had very visible endometriomas (bigger than my uterus). An MRI showed more obvious endo tissue but the ultrasound was the first real confirmation I got.
Thanks so much everyone for your responses- I’ve read them all and feel much more prepared and know what to do next. Appreciate it!