Hi just after people’s experiences with scanning for endometriosis please? I’ve had two ultrasounds and both were clear. Has anyone had clear ultrasounds but gone on to have something show on an MRI? I have been trying to get pregnant for 18 months and initially just had heavy periods and cramping for the first couple of days but now I get back ache a week before, really bad pains, constipation, shooting pains in my leg and a stabbing or pinching pain in my right ovary area (even when not on my period). I understand the only way is to get a laporoscopy but I would have to fund privately and was told it could reduce my egg count and as I’m 42 that could cause issues. I cannot afford IVF . I am prepared to pay and have a laporoscopy but would like to go in with as much info as possible. Do MRIs pick up endometriosis? The consultant said as the ultrasound was clear it’s likely to be superficial endo ( I’m not sure if that means minor ??)
Thanks in advance x
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I had an MRI scan that showed I had endometriosis, went in to have surgery and no endometriosis was shown so my surgery was ‘clear’. I know an MRI scan can show more detail than an ultrasound scan but the scans won’t give a diagnosis it just tells us if there is possible endometriosis shown, but now I’m baffled with what to do as my surgery was clear so it’s all a bit confusing
Was it a general gynae or an endometriosis specialist doing your surgery? Endometriosis can be hard to spot and it's unfortunately pretty common for a general gynae to miss it. I'm so sorry you're going through that
He is a specialist so I think he knows what he’s doing one surgeon said the prostap injection can hide the endo but surely he wouldn’t of put me on the injection before surgery if he thought it would hide it all
Hello, I had seven years of perfectly normal ultrasounds. The problem is the people not the scan. Most practitioners aren’t trained enough to spot the signs so unless obvious with a chocolate cyst, you’re likely fine. NOT.
I had a specialist one which resulted in a highly likely Adeno and Endo diagnosis. I then was taken seriously, had an MRI which showed deep infiltrating endometriosis and ovary attached to stuff. I’ve since had surgery and had endo confirmed by biopsies.
Always make sure those reviewing/reporting on scans are a specialist in Endo or at least have a special interest. I will say, I paid private for a specialist consult based on MRI results and they said they didn’t see anything wrong. Surgery has proved otherwise. Finding the right consultant is like finding a needle in a haystack but they do exist.
Hi, I had heavy period, back pain, bed bound on day 1-3 of period and then it wasn't till I start to get leg pain that a GP suggested I was referred to a Gynaecologist for Endometriosis. They were reluctant to do any scans and go straight to laproscopy (long wait). I pushed and fought for an ultrasound but this showed nothing. I then went for a laproscopy and then it was stage3/4 endo which was all removed. when trying to conceive they should check your tubes Hycosy test to rule out endo in tubes too. You have to fight, chase etx tho, well I did at my nhs trust
I've had an ultrasound+-8 years ago and everything looked clear but endo was suspected by my GP due to symptoms.
I've been ttc for the last two years, which resulted in an MRI last year and that confirmed severe endo (up to the point they could see my uterus and bowels have been fused).
I was informed to go down the IVF route or have a lapryoscopy to remove the endo, trying my luck with IVF first as lapryoscopy has some complications for me, given they need specialists that can look at the bowel situation.
Have you had blood tests done? My CA125 marker was higher then it should be (around 130) and the doctors indicated this is common for women with endo as it will be slightly above "normal" levels but way below what it is for women with cancer (in the thousands)
An MRI can reveal a lot, but it doesn't always show Endometriosis (Endo). If your consultant refers you for an MRI, I’d recommend requesting one with "Contrast". The Contrast is administered through an IV line and appears as a blue liquid that lights up on the scans, allowing consultants to see everything it highlights. The sensation is unusual; for about 5 to 10 seconds, you will feel a warm rush and might think you need to urinate, but you won’t—it’s just the feeling from the Contrast.
I’ve been dealing with Endo since I was 16, and now I’m 50 this year. I've experienced an Ectopic pregnancy and three miscarriages, leading to the loss of my left tube and ovary, with doctors telling me I’d probably never have children. I’ve lost count of the number of laparoscopies I've undergone! Eventually, I had to have a full hysterectomy at 38 years old, but even after that, I was diagnosed with stage 5 Endometriosis—frozen pelvis. I kept my right Ovary during the Hysterectomy; I didn't want to go through Menopause that young and with having a near newborn & my first son being only 16/17 months old, I thought it was too much to cope with.
In August 2023. however, I had emergency surgery where the doctors could only drain a 12 cm cyst on my right ovary, as it was deeply entangled in my sigmoid colon. I then underwent an 8-hour surgery in July 2024, with a gynaecologist, Bowel Surgeon, and Urologist all present due to the complications. The histology results came back with positive markers for MOC31 and WT1, and I’m still waiting to see what happens next—it has been a nightmare!
On a positive note, I managed to have two sons before my Hysterectomy; they are now 13 and 12 years old. I had the Hysterectomy shortly after my second son was born. However, I continue to face issues—my insides have been described by my consultant as looking like a car crash. My stomach was attached to my rectum, my Bladder was distended, leaving me with such bad incontinence, and part of my Sigmoid was also attached to my Rectom & the back of my stomach and I had so many adhesions that I nearly required a Colostomy bag. Thankfully, due to the extent of my problems -I also have severe Epilepsy, Rheumatoid Arthritis & CID - the consultant took the time during my 8-hour surgery to avoid adding the bag, which I appreciated.
Honestly, if I could share my story with all Endo patients, it would be to help you recognize when to take a stand—unfortunately, there are still Doctors and Consultants who dismiss Endo as not being a serious issue and believe that most of the pain we experience is all in our heads. Good luck with your journey & hope it gets sorted quickly for you.
Hi Iv had multiple ultrasounds either clear or multiple endometriomas shown on ovarys but this was apparently not connected (general gynae who specialised in maternity) CT scan showed nothing too. Few months later I payed privately for a MRI which showed multiple adhesions and endometriosis. I then had a lap privately for adhesions separated and endo ablated, 3 months of mild relief until all my symptoms and new came back. I'm now under endo specialist with NHS and have a MRI in April to see if it has come back. Although I was told ablation on endo doesn't take it away
Hey, really sorry to hear about your fertility struggles and your pain. MRI can show endo as can ultrasound but it is all about the skill of the scanner, I wouldn’t really be trusting any scans done by someone who’s not a specialist in detecting endo. Superficial endo is yes ‘minor’ in the sense that it’s not causing any deep scaring that can be detected by scans or sticking organs together with scar tissue which again can be seen more easily. Sadly this doesn’t mean it’s necessarily less painful or that it causes less symptoms. Some people can have deep infiltration and no symptoms and vice versa. It may be worth looking in to the success rate for laparoscopy with superficial endo for fertility as I was told there wasn’t a great evidence base for reducing pain for superficial endo and that was my experience when I had the surgery my pain was back 6 months later. I paid for an ultrasound with someone very specialist and made my next surgery decision based on that which helped. Sorry it’s all so unclear but hopefully some of what has been shared will help you make the right decision for you.
I had 2 ultrasounds and both were clear, when I had laparoscopy they found all the endo on my bowel - which is why my scans were clear. I’ve also recently had an mri which shows more endo, less than 2 years after my laparoscopy. It’s hard to advocate for yourself! But keep pushing, if I’d of accepted my clear ultrasounds I would still be none the wiser x
Hey I had a MRI and ultrasound which like you came back clear and I was so disheartened as I was told I had all the symptoms of endometriosis. In the end they told me to try to go back on the pill which I did a I had quite a lot going on last year. In the end I opted to have a laparoscopy later part of last year and glad I did it as it confirmed it but it’s not until I had my follow up appointment I found out the extent of it. If you have the choice I would say go for the laparoscopy if you want that peace of mind. Best of luck and hope everything goes well for you x
I saw an BSGE accredited endo surgeon privately, he suspected I had adeno and recommended an MRI. This diagnosed my adeno and showed ‘features consistent with deep infiltrate endo’. MRI does not diagnose endo, but can increase suspicion of it. Professor Jurkovic in London as I understand is one if the few people in UK trained to diagnose endo on ultrasound, otherwise it’s mostly missed.
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