Frustration after ultrasound

So my ultrasound came back clear and oddly I feel frustrated. I mean, no one wants them to find anything but I know something is wrong. I’m starting to get pain and other symptoms when not on my period. I’ve got a hospital appointment booked for July but I have no idea what I’m supposed to do before then. I tried a new painkiller but it just made my stomach feel weird and every day it’s on my mind. Another source of frustration is that everyone I’ve read about had an internal exam and I only got the external and I’m concerned that they might have missed something.

[AlexaMac]

Hi l have been on a similar journey to yourself, although l am 76. When referred to gynea l had an internal ultrasound to measure endo as have post menopause bleeds.

If you can get an app with your family doctor maybe ask for this and if possible MRI which l had a few weeks ago and is not as scary as some seem to think.

Hope you soon have the answers you need, Alexa 🌸

[Hidden in reply to AlexaMac]

Hi Alexa, thank you for sharing your journey. I am gonna ask for an internal ultrasound and/or an MRI. How was your experience with the MRI? I’m not really worried about that. The internal examination makes me a bit uncomfortable because I’ve never had anything like that before. But I’m not gonna let that put me off. I’m ringing up the doctors tomorrow!

Rhiannon

[AlexaMac in reply to Hidden]

Hi l was apprehensive before the MRI as l suffer from claustrophobia but l was fine, l asked to enter feet first and was able to see the ceiling of the room l was in. Only went into the tube up to my neck and had a panic button given to me just in case. It was noisy at one point sounded as though a lorry was emptying its load of bricks upon me, but this just made me smile as it was so silly. My scan took 24 minutes and l was really surprised when the technician came to help me out and certainly will not be scared if it has to be done again at any time. Also you can take your favourite music cd and they will play it to you through your ear protectors.

Hope you soon have the answers you need to your health worries, take care, Alexa

[Coral07]

hi, I would deffinatly try and get referred for a internal scan as they have proven that the external ones don’t see endo as well as the other even my specialist told me this in September when I had my coil changed. I had the same oh nothing no then got referred for a internal scan and straight away the women could not only see endo but a cyst on my right ovary I was so angry that in the day of 2023 they are still being small minded and treating us like this! Best advice my mum gave to me growing up and I always pass on is No matter who someone is and how long they been a doctor or specialist they will never ever know your body better than you🫶🏼 Hope this helps.

[Hidden in reply to Coral07]

Hi, thanks for your insight! Virtually everyone has recommended I go for the internal scan too. I’m trying to work with the doctors as my doctor in my uni town has been super helpful but I was a bit taken aback by how quickly it was all over when I went for the external scan. An internal one wasn’t even mentioned.

[Felma]

this is the rule for endometriosis. adenomyosis might have been found or ovarian chocolate cysts . diagnostic laparoscopy and biopsy of endometriotic areas is the standard. TVS is better . for sure . if yu ever have been sexually active.

[Hidden in reply to Felma]

HI! I’m not too sure what you mean by it being the rule or the bit about adenomyosis. But thank you!

[CryBaby91]

Hey! Clear scans are common, most sonographers don't have the required experience or expertise to be able to find endometriosis on a ultrasound. It's possible, but only when you have a proper endometriosis specialist doing it. MRI is the same, if you don't have a specialist then the scan may come back "clear". Mine all did! I even had a gynae tell me it couldn't possibly be endo! Fast forward 2 more years and they found endo during my lap plus adhesions that stuck my uterus to my stomach wall. Clear scans are not always clear cut! I also have symptoms outside of my cycle, it's awful what are you doing for pain relief currently? Xxx

[Laurakirsty in reply to CryBaby91]

So interesting to find out about these scans not showing Endo. I have had several that have come back clear to them find I had a ton of adhesions like you....so important not to keep getting fobbed off and get a laparoscopic check. I got fobbed off for 30 years!!

[CryBaby91 in reply to Laurakirsty]

It's a really big issue for lots of us, because too many doctors think that a clear scan is a way to rule out endo. But it's just not true! There is abilities to see endo on scans, but generally only in the hands of proper specialists. Not just "special interest" or even a specialist centre. But actually endometriosis specialist, which is few and far between.

[Laurakirsty in reply to CryBaby91]

Thanks for shedding light on that. Just goes to show how misunderstood it still is

[Fitzwell in reply to CryBaby91]

This is so reassuring to hear that other people are going through the same thing. I have been treated for endo before in 2015 and just know by my body that something is not right, but had an MRI a couple of weeks ago where everything apparently looks "normal". But I have some kind of pelvic or back pain most days, not just at the time of my period. There's only a small number of days a month where I am pain free. It is so draining.

I have booked a tel call with the consultant for next week, and I've booked to see the GP again to see if I can get referred to a specialist endo centre. Good luck to everyone. we have to keep pushing for the right treatments.

[hobbitty]

👋😊 hey! My first ultrasound came back clear as well, in fact it was apparently "grossly normal", then a few weeks later I was called in for another ultrasound I have no idea why but apparently they wanted to check my right ovary - I did the ultrasound again and this time cysts and endometrioma were found on both my ovaries - without doing an internal scan! I'm still on the waiting list for gynae but my second doctor who did my ultrasound was a woman and she seemed to understand my symptoms for endo better

[Hidden in reply to hobbitty]

Hi! I am definitely gonna ask for further scans. I have an appointment at the hospital in July but want to get a few more answers before then. Thank you!

[Avourneen]

An extrenal scan won't show anything it is completey the wrong scan to look for endo. I'll message you some info about getting a good scan. xx

[Hidden in reply to Avourneen]

Thanks and thanks for your message! I’m not sure my circumstances would allow me to pursue the route you did but it’s really helpful to hear your journey and get an idea of my options! Thank you again!

[CCWildSwimmer]

Hi - I see you have been given some great advice already! In my case they couldn’t pick up anything with an ultrasound, other than they could see that some organs had less movement than they should, meaning there could be adhesions wrapped around them. I then had an MRI which showed deep. rectovaginal endometriosis. Unfortunately this was missed at a previous laparoscopy as they looked in the wrong place… keep pushing for answers and sending lots of love in the meantime x

[Hidden in reply to CCWildSwimmer]

Hi. Thanks. I really would like an MRI I think. I feel a lot happier with the odds of getting answers with an MRI. Thank you!

[courtneyhatts]

Hi I thought I would share my experience with you.

I had many tests and scans done for 3 years starting when I was 17/18 years old , ultra sound being one of them and everything came back normal which was so frustrating, I mean it should be good nothing came back but not when you know there is something wrong and you know your own body. I didn't even know about endometriosis until I told my nan about my symptoms and she told me she has endo and I have the same symptoms she has. This is when I told the gynaecologist about this and it took them a while to agree for me to have laparoscopy surgery. But looking at women's journeys living with endo and their symptoms I was 99% sure I had this and was not going to give up. I finally got my surgery in December 2021 and was diagnosed with stage 3 endometriosis- my left ovary and fallopian tubes are stuck together and my bowel and womb is also stuck together. I have just had my MRI scan to see if the endo has deeply penetrated through my bowel and I'm on the waiting list for my next surgery.

it took me 3 years to get diagnosed and was finally diagnosed 2 years ago at the age of 21.

Please don't give up and keep fighting, you know your body. Just keep pushing and pushing until you get an answer

[Hidden in reply to courtneyhatts]

Hi! Firstly, it’s really reassuring hearing the experiences of someone close to me in age too and I feel like we’ve almost had exactly the same experience. My father told me about my grandmother having it and he’s been very helpful in getting answers (I can’t ask my grandmother). My doctor seems a lot happier for me to have the surgery as she referred me to the hospital after our first appointment which was vaguely panic-inducing but also what I wanted. I think I’m gonna try and get an MRI before my surgery to get a clearer picture. Thank you for your advice and for sharing your info. It has been so helpful!! I hope the journey improves for you now that you’re starting to get answers!