Diagnoses from MRI?

[Bonaire]

Hello

Just a question around diagnosing. Can an MRI diagnose or does it have to be Laparoscopy? Would anything show up on internal ultrasound?

thanks

[PaintToughTed]

I believe generally that laparoscopy is the only way to definitively diagnose Endometriosis, but you can still have a suspected diagnosis, so scans play their part but you will only know for certain following a laparoscopy.

I think how my diagnosis went might be useful. I have always had bad period pains and 5 years ago and was given transesamic acid and an internal ultrasound, ultrasound showed up nothing, and I didn’t go back to my GP for further investigation, as I’d assume that had been the test that would show it (duh and kicking myself now not knowing to push for further!)

Cut to this year, I had one period that it felt like something was ripping internally, ambulance never came, but went to the GP next day, got sent for an ultrasound and they identified a polyp. I went on a wait list to get it removed. After 4 months had heard nothing and my work offer BUPA, so saw a consultant privately and he said look it sounds like endo to me, I’ll remove the polyp and I can do an exploratory laparoscopy at the same time, if I find any I can probably remove it there and then.

He found stage 4 endo, several patches on my small intestine, ovarie,s lots of adhesions and will need shaves. So he couldn’t remove it all as need a bowel specialist to do the bowel stuff, so didn’t remove any and sewed me back up. In the follow explained would need major surgery.

I’m due to have that operation next month to take it all out, resection bowel and a partial hysterectomy. To plan the operation they did an MRI to understand the extent to which different organs have been infiltrated.

So I’ve had internal and external ultrasounds that didn’t show it up. Despite having lots of it. I had an MRI to look at it, but only once they knew I had it, and it took a laparoscopy to diagnose it.

Hope that’s helpful!

[Bonaire in reply to PaintToughTed]

Hi there,

Oh wow that’s really helpful thank you! Glad they finally figured out what was going on!

I’ve also had a polyp removed privately - wish I’d have said then can you do some more investigating whilst you’re down there! Mine isn’t generally round my period ls and pain, I get spotting around and after ovulation, they’ve always put it down to “hormonal change “ as this month I’ve had tummy ache with it.

I think if I ask for the Lapos this time round I’m going to have to go NHS, unfortunately I don’t have insurance and had to pay ! That’s great you have insurance through work !! X

[AllthatGlitters]

they can diagnose adenomyosis with an MRI scan but endometriosis has to be done via laparoscopy. That’s how I was diagnosed. Hope that helps x

[Tealdelights]

I was having problems with my periods and felt like I had a melon in my womb that would drop every time I went to the loo. I was sent for a ultrasound both internal and external and they found a cyst on my ovary and the lining of my womb was thicker than normal.

I had another ultrasound to check the cyst which had grown. In the end I had to have an investigative laparoscopy which showed I had endometriosis and my ovary had actually stuck to my womb.

Do they can get an idea with ultrasound but do need the laparoscopy to confirm.

[Bonaire in reply to Tealdelights]

Thank you that’s helpful. I’ve had a number of internal & external ultrasounds and investigations. I just feel from my symptoms and Googling it feels like endo! I don’t necessarily suffer with my periods, but I get spotting round ovulation and Somtimes tummy ache at this time which is my concern. They’ve always put it down to hormonal change. I’ll keep pushing!

[Lindle]

You have been given some very outdated information. Laparoscopy is no longer the gold standard for diagnosis. A lap can only see within the peritoneal space and endo can be beneath it. The most common location for deep disease is behind the uterus in what is called the rectovaginal area and endo can be deep beneath and not visible.

Scan technology is now advancing and a scan must be done first - endo specific transvaginal ultrasound or MRI - to look for deep endo. If it is found then this is a diagnosis and referral would then be to a specialist endo centre where severe endo must be treated. That cuts out the need for an unnecessary diagnostic lap. If no endo is found on a scan referral is then to a gynaecologist with a special interest in endo in general gynaecology who will either treat medically or do a diagnostic lap - it would be your choice.

We do have a problem in that sonographers in general gynaecology aren't usually trained to look for deep disease apart from endometriomas in the ovaries, and this is where progress needs to be made. Those being referred for a scan for suspected endo need to ask to be referred to at least a grade 2 sonographer who has been trained to look for what is called the 'sliding sign'. This shows whether the uterus and bowel slide freely against each other. If they don't it is a negative sliding sign which is an indicator for rectovaginal endo. Endometriomas are usually a sign of RV endo as well and we really do need to see women being referred for a more advanced scan once endometriomas are found.

I'll tag you in a post about this.

[PaintToughTed in reply to Lindle]

Thanks for sharing Lindle, really useful to know. Confused that my consultant opted for surgery first and not a scan in that case.

Also on the NHS website it says a laparoscopy is the only way to be certain you have endometriosis.

From what you’ve shared it sounds like an ultra sound could diagnose severe endometriosis if it’s in a particular location and only if it’s conducted by an individual trained to a specific standard. I worry most having an ultrasound, and hoping to find out if they’ve got endo, won’t be able to now one way or the the other just from the scan.

[Joliene in reply to Lindle]

Hi Lindle!

Would you please kindly tag me too in that post or maybe link it here as a comment ? I am in the same situ as Msmael waiting on diagnosis of suspected endo been stuck in NHS… I have adenomyosis diagnosed, and pain here and there in abdomen but most severe is on the right upper side. GPs firstly want to rule IBS out but i am getting more and more certain about it being endo grown either on intestines or diaphragm. Thank you Lindle! It is very important to be prepared before we go to GPs nowadays otherwise we slip off the track

[Pinkybow]

I had ultrasound after ultrasound because they found a 9cm cyst and wanted to watch and wait. It must have been about a year when it was finally discovered to be an endometrioma, then I was told to have a lap and the surgeon was shocked, I had kissing overlies and a "bulky" womb as well as pelvic wall adhesions. He removed all the endo. This was 5 years ago. Fast forward to the present and when I returned to him he gave me an MRI he discovered lots of adhesions and endometriomas and am waiting for surgery. I think the idea of having an MRI after an ultrasound should be standard to be honest, I feel it shows a lot more and nobody wants to end up having surgery either unnecessary or an unexpected amount of surgery. I hope you get sorted soon lovely x

[Avourneen]

Hi Bonaire,

MRi is now considered the gold standard for diagnosing endo. Often surgeons actually miss endo or adenomysiois on the lap that shows up on the scan. Endo will aslo show up very well on an internal ultrasound.

I think the problem that people like Msmael havhad is that their scans are often done by sonographers who don't specialise in diagnosing endo or who only have basic sonography skills. With treatment on the NHS you have no choice over who does the scans.

Any surgeon who is any good will have his/her own sonographer and will not carry out a laparoscopy without a scan. A skilled endo specialist will use the scan to make sure they don't miss any endo and it is vital to getting a good outcome from the surgery.For example adenomysiosis is often missed in a lap but very clearly seen on a scan.

A laparoscopy is often presented as a tiny operation with no dangers because it is keyhole. But every time an operation is carried out it creates a lot of internal scarring. So you really should want to have a very good op that clears all the endo not half of the endo removed and half left because you werent scanned properly then another op needed in a year.

Lindle is absolutely correct on this point. I would suggest that you stay away form any surgeon offernig you a lap first. I had a lap first and no proper scan the surgeon thought the endo was stage 2 and burnt a bit off. The pain continued and I went for a second opinion the endo was actually stage 4 and right through my bowel and I needed another operation. A skilled specialist will never offer to do an op without a good scan.

I'll pm you some useful info.

[Yellow-Moo]

Hi Bonaire, I was diagnosed after an ultrasound scan showed an endometrioma and then I had an MRI which also showed endometriosis. Both my scans were discussed at a MDT meeting with all relevant specialists present and they were happy to diagnose me from that. I am now scheduled for a lap next month to have excision surgery. This will then show everywhere the endometriosis is and I’ll know the true extent of it.

It is totally possible to be diagnosed via scans however if nothing shows on your scans that does not mean you don’t have endometriosis. These types of imaging may only show DIE, endometriomas or signs that can suggest endo. If your scans are clear, keep pushing!

It’s also worth noting that the level of pain you may be experiencing doesn’t always correlate with the amount of endo/stage of endo that you have. You can have a mild case but be in total agony or an extreme case and not experience as much pain. Either way your pain is valid and you deserve a diagnosis and treatment. Good luck!

[Moomin44]

Hi,

Both my surgeon and GP said that laparoscopy was the only way to see. However on the forums lots of people have said they have been diagnosed both with MRI and ultrasound. It seems that it doesn’t always necessarily show however and depends on skills of person interpreting the scans.

[EndoViking]

As has been mentioned an MRI will pick up DIE endo. I had a lap done and was told I didn't have it. Swapped to a new consultant who sent me for an MRI, low and behold I did have endo on my pouch of douglas

[Lotofluckneeded]

I went for investigation for to sub-fertility and knowing my sister had it (from laparoscopy) - she has unbearable period pains. I had minimal pain with bowel movements, occasional pain with intercourse.  The MRI showed deep infiltrating endometriosis. Treatment would be laparoscopy. Let me know if you want more info

[Bonaire in reply to Lotofluckneeded]

hey

Thanks for this , very interesting. Did they just give you a MRI as part of your fertility check that’s really good and detailed if so! We’ve also been through the fertility thing for male issues x

[Lotofluckneeded in reply to Bonaire]

as I had private medical I got a referral from GP being careful not bring fertility into it.. but when I saw the Gynaecologist I explained all - that I had been thru 3 rounds of ivf at that point. I just wanted a diagnosis and it know if on my ovaries. Seems from MRI is wasn’t which makes sense as I get eggs..I have it recto/vaginal which means I would need a bowel expert present 😱A laparoscopy is the way forward but in my case not been advised due to wanting to crack on with ivf (we have male factor too like you) . Issue is now I’m getting pains by my appendix and I’m v worried it’s endo related!

I hope you don’t have endo x

[Endo_27]

Hey, I had an MRI which told me I have deep stage 3 endometriosis and adenomyosis and showed cysts. I haven’t had a lap yet, but I can’t be “officially” diagnosed with endo until I’ve had a lap x