Just had an ultra sound and vaginal scan ... - Endometriosis UK

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Just had an ultra sound and vaginal scan but not the outcome I wanted

Fallenleaves profile image
24 Replies

They did not see any cysts or fibroids. This may sound ridiculous but I'm a little disappointed as it doesn't tell me anything and I'm no further on. I was convinced I had a cyst because of all my pain and symptoms. I'm convinced I have endometriosis. Does this mean I couldn't have it ?

I have Drs appointment next week I'm worried they won't investigate further.

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Fallenleaves profile image
Fallenleaves
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24 Replies
Laura_T profile image
Laura_T

They didn’t see much when they scanned me only a cyst. Then I was referred onto have the lap and that’s when they found endo attached to my right ovary and bowel. Just push for further investigation. Keep at them or nothing will be done.

Annie-P profile image
Annie-P in reply toLaura_T

Hi Laura, sorry to hijack this original post but I just wanted to ask who referred you for the lap? I was referred to a Gynaecologist by my GP & had my 1st app last month. I thought I'd be referred for a lap but the Consultant sent me away with Microgynon (I was distraught because a different GP had done this year's before!) I was convinced I'd get a diagnosis. I've got a 2nd consultation next month & I'm hoping for either an MRI scan or a lap to confirm what I believe.

Thanks for reading

Annie x

Laura_T profile image
Laura_T in reply toAnnie-P

Hi. I was referred by gynaecologist for the lap. GP referred me for scan. The wait was long so I paid private to see the gynaecologist. As sad as it sounds I didn’t want to wait months to see one. I then had a 6 month wait for the lap. After the first lap I had a review with gynaecologist on NHS and was put back on waiting list for second lap as symptoms had worsened. All I can say is at the review with gyne demand further investigation. If you are shy like me and don’t feel you can demand take someone with you that can help push this. I’m not sure if a GP can refer on for lap or if it has to be a specialist in that area. Hope this helps you x

Annie-P profile image
Annie-P in reply toLaura_T

Thank you for your reply, it is really helpful.

It's completely understandable you didn't want to wait months to see a Gynaecologist. I definately will push for a lap at my next appointment. My sister has offered to come with me as I'm not very forceful & sometimes forget to mention things!

Thanks again x

Laura_T profile image
Laura_T in reply toAnnie-P

I would defiantly have someone with you. Also I wrote down every symptom I had and took that with me. Maybe do that as well. Good luck x

Annie-P profile image
Annie-P in reply toLaura_T

I will do that. Thank you :) Xx

If you have a look at the new NICE guidelines published in September this year they specifically say that endo cannot be ruled out by a clear ultrasound.

It's no. 1.5

nice.org.uk/guidance/ng73/c...

Might be worth printing this out and taking a copy with you to see your GP. FWIW my initial scan at the local hospital was classified as normal (despite them finding hydrosalpinx in my right fallopian tube and cysts). The scan done at the BSGE centre found 4 lesions which were all over 2cm, plus adenomyosis. It really depends on the skill of the radiologist and the machine they are using - spotting endo on a scan is a specialist skill. x.

Bella29 profile image
Bella29

Yes I agree with other comments. Push for more investigation. Scan doesnt always show things plus it depends where u r in ur cycle sometimes.

My CT scan showed a bleeding cyst but they said it was normal and didnt in itself merit further investigation.

My consultant sent me for laparoscopy cos of bowel pains and period and ovulation pain levels. The lap found the endo the scan didnt spot!

Definitely use NICE guidelines. As has been said they ve been v recently updated and I doubt all gps/consultants have taken the time yo read through, esp considering their workload or if dealing with various health conditions. A close friend of mine has endo and works in hospital. I told her about the new guidelines and she said 'the majority of doctors she know will prob never read them'!!!😱

ILouiseP profile image
ILouiseP

I also had a scan because I thought I had endometriosis and they said my endometrium lining was fine however I may have PCOS as I have lots of small cysts on my ovaries. I know how you feel, not that I want to have a condition but I wanted an answer to why I was having all this pain and to see that it all came back 'normal' was very disheartening which is hard for others to understand. I pushed for further investigation and they have me booked for a Lap later this month so hopefully will find answers as to why I'm in so much chronic pain! Keep pushing- you know your own body and you know this isn't normal !

MaryLou11 profile image
MaryLou11

I had two ultrasounds and a vaginal scan and they said they couldn’t see anything but normal cysts as part of my monthly cycle. I then had an mri scan which showed a large chocolate cyst in my right ovary! And endo plaque behind my uterus.

You might have to be persistant with your docs - in the end I paid for my mri scan myself to get my diagonisis

Fallenleaves profile image
Fallenleaves

Thank you. My Dr told me they won't do an MRI. Very frustrating. Can you get an MRI without your Drs consent privately ?

Bella29 profile image
Bella29 in reply toFallenleaves

Yes u can phone up ur nearest private hospital and ask. U d have to pay about £200 for a consultation first so they can recommend specifics for ur mri then the scan is £500+ depending on regions of body. Then a further cost for interpretation of results... as far as I know anyway...

Bella29 profile image
Bella29 in reply toFallenleaves

At the v least I'd ask for a second opinion x

MaryLou11 profile image
MaryLou11 in reply toFallenleaves

The private mri Clinic I went to required a doctors referral. I asked my gp to complete this for me rather than the gynaecologist. Which dr has said you don’t need one? Even if you said you were going private I think they’d still do the referral for you. Though there might be clinics that don’t need referrals! Let me know how it goes!

I cried when I got my diagnosis as I was so relieved I wasn’t imagining things, so I can emphatise with how you feel. Not knowing is horrible!

Take care xx

I had a 3rd Ultrasound scan last week. My first one discovered I had cysts and now the pain still persists. I got the results yesterday from lasts weeks - 'Normal - No Action' I feel you, people would jump for joy and I'm angry! I'm in the same boat as you and feel something else should be done. I'm hoping to get into the doctors tomorrow to discuss it. Hope everything goes your way when you speak to your doctor xxx

Fallenleaves profile image
Fallenleaves

Oh wow, you have a cyst and they're not doing anything ? That's terrible. I'm so worried now my pain is constant and severe right now. I hear you. I hope they sort it quickly for you too

Fallenleaves profile image
Fallenleaves

Think I'll go for a private MRI scan then. Even though my Dr says I don't need one. Maybe it will show something on there better than an ultrasound.

Bella29 profile image
Bella29 in reply toFallenleaves

I think the best way of getting diagnosis is laparoscopy.. but apparently that costs about £2000 private...

Fallenleaves profile image
Fallenleaves

Yes I had read that. I'm hoping I'll eventually get a lap but for the time being does anyone think an MRI would be a good option for me ? I've just had a read about mris being able to detect endo better than ultrasounds.

Heloo85 profile image
Heloo85

'Normal' results are the bane of my life. They annoy me. But then i got a copy of my medical notes and would you adam and eve it, over the years ive had loads of abnormal results that would point to more going on than meets the eye. Ive had anemia. *sign of endo*. High inflammation markers *sign of chronic disease*. Ive had 3 abnormal ecgs, abnormalities found on an echo, but my palpitations/pain/breathlessness was put down to anxiety? And not treated medically. Anyway, my endo become accute, but the only thing my first ultrasound suggeted was PID. A ruptured cyst caused PID. I was later diagnosed with stage 4 deep infiltrating endo of both ovaries, fallopians, bowel, bladder! Drs are useless! Push further but good luck! Its an uphill battle with the NHS. Xx

SEB88 profile image
SEB88

Hi, in a short answer, yes, it has not been ruled out. Joreilly is right take the nice guidelines, my endo was only found on ultrasound by a specialist, my local hospitals ultrasound department only found the cyst and that was coz it 7cm!

It can be hard being pushu, but i have found walking in with with printed out stuff means they take you seriously and dont fob you of. X

Kcresswell profile image
Kcresswell

I had ultrasound, MRI and CT scan to diagnose on going pain, None showed endo. Pushed for laparoscopy where general gynaecologist found endo on pouch of douglas. Pain was same after operation so pushed for laparoscopy with a endo specialist. He discovered and removed endo from two separate locations affecting my bowel. MRI cannot rule out endo! So might as well go straight to laparoscopy, you have to keep pushing for referral.

Very important to be referred to endo specialist as general gynaecologist are not always skilled enough to spot hidden endo.

Good luck X

Lexie0590 profile image
Lexie0590

Good morning from Alaska! I relate to your post beyond words; over the summer I had a vaginal ultrasound completed and nothing of importance was found. My fiance and I have been trying to conceive for over a year now and he has been analyzed and there's really no issues on his side. They told him because all of my paps and scans have come out normal there's no reason we can't get pregnant. I was also disappointed the ultrasound didn't find anything substantial because I have pretty nasty pain during sex and ovulation and on and off throughout the month :/ I hope you get the answers you need ♡♡

Josephine25 profile image
Josephine25

Hi

I felt so compelled to write today.

I feel so sad to hear you lovely ladies are still facing the same struggles I had 25yrs ago to find the cause of unexplainable pain and to find a solution.

I was finally diagnosed with endo 16yrs ago after a 9 yr stuggle.

All i will say is that you know when something isn't quite right and don't ever give up...

💗💗💗💗

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