Ultrasound came back normal,what now? :( - Endometriosis UK

Endometriosis UK

70,129 members51,941 posts

Ultrasound came back normal,what now? :(

MrsTwiney profile image
15 Replies

Hi,this is my first ever post!

I visited my doctor about my excruciating periods and the (to put it mildly...) difficulty,I have going to the loo at the time of the month.

She sent me for an ultrasound and I've just received my results over the phone. The receptionist told me that "the doctor has written - normal,no further action required"

Well where does that leave me?

I feel so let down. Do I just leave it now and put up with it?

This happened when I was 16 (11 years ago!) nothing came up on the ultra sound ever! Then they FINALLY gave me a laparoscopy and found adhesions on my bowel.

I've had 3 lovely children since then,conceiving wasn't a walk in the park but around 12 months to conceive. Now my youngest is 16 months and since she's been born I'm in horrendous pain every month.

Please please can someone give me some advice? I'm so confused xx

Written by
MrsTwiney profile image
MrsTwiney
To view profiles and participate in discussions please or .
Read more about...
15 Replies

I'm 16, got sent for an ultrasound in August which came back normal, since then I have moved and changed GP and they referred me to pediatrician who then said my long medical history of this pain (had it since I started my periods when I was 10 and been going to doctors ever since) was a job for the gyn but got a letter back recently saying I need to go get tested for everything at GUM clinic because I am now sexually active and if nothing comes back then the gyn said it isn't his problem.. feel like I am back to square one, going to GUM clinic on Friday but I have had the pain since I was 10, I only became sexually active when I was 15 so they can't blame it all on that, I have 99% of endo symptoms and it runs in part of my family :( Feeling fed up but hopefully you will get somewhere but from my only experience with the gyn and his letter, just sounds like they constantly want to pass it off to someone else or stick everyone on meds even though I am sure just doing a lap first to see if anything is there would solve a lot of issues for a lot of people but that will never happen as I understands ops are expensive for NHS but it is needed really :/ seeming as you have had a baby in the last 2 years, have you ruled out SPD as a possible cause of some of your pain, as it could also intensify the endo pain because it is all in the same area. I wish you the best of luck xx

Mabes profile image
Mabes

Book a GPs appointment, go back and ask what the next course of action is in view of your continued pain/suffering and the clear ultrasound scan.

An ultrasound scan will not find endometriosis unless you have an endometrioma or they know what they are looking for - e.g. I had endometriosis showing in my scans, but the sonographers didn't know how to interpret it from the scans. My left ovary had become stuck to my pelvis and my right was trying to do same thing. They'd always comment how they couldn't find my ovaries easily but they'd eventually find them and pronounce my u/s normal. I'd realised what I thought was happening and surgery proved me correct, but it was no help me knowing as no doctor or sonographer put 2+2 together.

I would suggest you ask/push for a gynaecologist referral.

charlie_mk profile image
charlie_mk

Hi MrsTwiney,

I'm sorry to hear you have been left like this! I would suggest you pursue it further!!

I had 3 scans done (internal and external) and they all showed 'normal'. Fortunately, my treatment was private and being paid for by my work so the gynae didn't stop there. I had a laparoscopy done and 1 ovary was attached to the side wall, I had one cyst and both fallopian tubes were a bit clogged. He also found a large amount of endo - particularly on my bowel and pouch of douglas. I was shocked that nothing had shown up on the scan!

I don't want to scare you as yours may not be as bad as all that, but I just wanted you to know. Don't give up - tell the docs that you've read about people having endo despite clear scans etc and hopefully they'll look into it further.

Best of luck hun xx

Vicki_Ann profile image
Vicki_Ann

I agree with others, scans are hopeless for detecting many changes caused by endo. I would push for another laparoscopy. Best of luck, I hope you get it sorted!

somegirlcalledjo profile image
somegirlcalledjo

Hi there! I have had three scans, two internal and one external. One of these was private. The first one, external showed nothing. I then paid to have an internal scan done privately on the advice of a consultant, and it again showed nothing. BUT no more than 6 weeks after my private scan, I had another internal scan done on the NHS (by the same technician!!) and this time they saw that my ovaries were stuck to my bowel and a large pocket of endo on my bowel too... This could not have happened in 6 weeks, so they just missed it the first two times. Don't feel disheartened if it doesn't show anything as only way to be sure is to have a lap. Hope you get it all sorted soon!

blondielocks profile image
blondielocks

keep at it. I had an ultrasound last year for the same pains i experience now and was told "all normal" after years of complaining.

i recently had another ultrasound after changing gps and kicking up a fuss, the ultrasound lady said my ovaries uterus and possible bowels were adhered.

then the report she sent to my gp said normal (acording to receptionist) i then argued it, and said well no thats not normal. after a lot of tooing and froing gp finally got hold of us images, and ive been to see consultants and having zoladex. got my surgery tomorrow!

glad i persisted, even my partner had got to the point of beleiving what the doctors were saying and teling me to "just listen to them" even though i knew they were wrong!

xxx

nazabrar profile image
nazabrar

Endo and adhesions cannot be seen in Ultrasound. My consultant did diagnostic laproscopy first to see if there is any endo and to what extent as it was not visible on scan. To my or his surprise, he found Stage 4 endo and very dense bowel adhesions in laproscopy. Then he sent me for MRI which showed further endo in back of rectum and pelvis. If there is a pain associated with Periods, it is 200% endo and adhesions from my experience of 15 years of pain.

MrsTwiney profile image
MrsTwiney

Thank you so so much everybody. I'm so greatful for your advice. I'm trying to get to grips with this site but from what I've read,it's not easy to get a straight forward diagnosis.

I will persist! You've given me faith!!

Ps. Any tips on easing the pain of going to the loo during periods?

Sobbing on the toilet whilest gripping on to the radiator next to it isn't a good look lol

Thank you ladies! xxx

PainfulMe profile image
PainfulMe in reply to MrsTwiney

This is going to sound a little strange...but I have recently found the craziest success with a supplement called Devotion 24/7. I don't know what it is in it, but it is the only thing I have found that really works, and it was a completely accidental discovery. Even sennokot etc wasn't doing anything for me.....the pain and bleeding surrounding it is just crazy... :(

aw8495 profile image
aw8495 in reply to MrsTwiney

Hi, I have found lactulose syrup works quite well - hope it helps you :)

Anna

HotDiggidy profile image
HotDiggidy in reply to MrsTwiney

I had endo in my bowel to the extent that I had a 'period' from my bowel every month before I had a bowel resection that finally resolved it.

Things that helped me in the years where my bowel condition slowly deteriorated was:

- eating bran flakes for breakfast for a week before my period

- cutting out bread

- using a stool for my feet whilst on the toilet

LittleJo30 profile image
LittleJo30

Hey, sorry to hear your having such a bad time. I had swabs and ultrasounds that all came back clear. I had a good gp who referred me to a gyne. Had a lap just over a year ago and was diagnosed with stage 4 endo on uterus and bowel. So scans are not to go by, I would go back to your gp. Xxxx

Queenbee1987 profile image
Queenbee1987

My scan came back clear today even though I've had really bad pelvic pain and shooting pains like I've been stabbed and bleeding when I'm not ment to and the past week my legs have started to hurt and the lower part of my back can hurt. It's bothering me so much scan hasn't showed anything when I know I'm in pain like I am it's like they don't believe me

KarBear496 profile image
KarBear496 in reply to Queenbee1987

Have you found anything out? I am going through the identical symptoms & first scan came back normal.

Ruby1221 profile image
Ruby1221

push for an mri. Sounds like adenomyosis

You may also like...

Lap came back normal, what now?

as a result. I had a diagnostic laparoscopy in February and the doctor said it came back normal...

Now what? they've found a cyst on a basic ultrasound but is that it now?

I got referred for an ultrasound due to listing some symptoms of Endo, the one that got them...

What now? Ultrasound results.

I was sent for an pelvic ultrasound last week and phoned the GP today to find that my results were...

UPDATE. Thickening of the womb at 51. Ultrasound said ovaries normal but now biopsy needed. 😔

Hello. It’s me. Must have had dozens of vaginal ultrasounds but this radiographer particularly...

Histology came back clear - what next?

give advice! I've had pain for years and a couple of years ago I went to the doctor...