MRI - did it show endo for you?

[Hedgehog_1]

Hi, hope you’re all doing ok.

After a lap 2 years ago showed no endo ( general gynae) , I have since had an initial appt with an endo specialist . Private appt which was money well spent and now under her on nhs. She’s pretty certain my endo was missed on the initial lap due to my symptoms, sticking ovaries and adhesions. Recently had an MRI and awaiting results. I believe it doesn’t often show up endo, so whilst I await outcome I just wondered , has anyone had successful diagnosis from mri and also, if anyone has had nothing show on mri but then subsequent diagnosis after laparoscopy? Most likely ages before I can have a repeat lap.

Many thanks xx

[Smokey2020]

Hi there. I had an MRI as cancer MDT requested it after a CT scan. They then referred me to endo center due to MRI results. I had a private consultation then with endo guy who agreed MRI showed endo so it would seem MRI can show it but only when it’s pretty advanced I think. Hopefully you get some answers soon.

[Hedgehog_1 in reply to Smokey2020]

Thanks, hopefully will give me some indication then as to level of severity depending on if anything shows. X

[Nelly_Star]

I was diagnosed by MRI in March last year and had extensive endo removed from sigmoid bowel, left fallopian tube, ureata, and pelvic cavity. But from what I have read, MRI can show up severe cases but shouldn't be used to rule out endometriosis as it cannot see milder cases. My consultant said to me before the op that there would be more endo than they could see on the scan but it allows them to plan for complex surgery so they can have the right specialists there as they operate rather than having to defer treatment. Good luck with your journey xx

[Hedgehog_1 in reply to Nelly_Star]

Thankyou, that’s really helpful. Hope you are feeling better after the surgery. X

[Nelly_Star in reply to Hedgehog_1]

Thank you, I am - 7 weeks tomorrow. I was very lucky to get the operation

[hrcArch]

I was diagnosed from my MRI, but my endo is really severe (the gastro doctor said it was the worst MRI he's seen for the condition, looking at the bowel). I also have heard many saying it didn't turn up in an MRI, but was certainly there. I think it varies - if it's quite severe or maybe happens to be in a really visible location, they can see it in the MRI, but if it's less severe or less visible, they can't (hence why they usually only officially diagnose through lap).

[Hedgehog_1 in reply to hrcArch]

Thanks for your reply. Seems it does show up when severe going off the responses , I’ll have to be patient and see what they come back with. Sounds like you have it bad, hope you can get the surgery you need soon x

[Christie-elli]

Hey I have stage 4 extensive deep infiltrating Endo and mine was diagnosed though MRI but from my understanding it only shows the more extensive Endo rather than milder cases x

[mrskiki]

I was in for ovarian cancer tests and had MRI. After MRI they suspected the dodgier irregular looking ovarian tumours may be haemorrhagic cysts so it seemed to show these in much more detail than the ultrasound, which made them just look much more sinister. They didn't seem to pick up that my ovaries were glued to everything else and I didn't get an endo diagnosis until they operated to remove the ovaries/cysts for biopsy but had difficulty as they discovered the endo and they were glued to my insides. They didn't pick up that uterus was glued to bowel too so couldn't complete the hysterectomy. All a bit of a mess and I don't know what stage I am, all they would say is that it was 'all endo' but I was surprised that the MRI hadn't shown them all this before the op started .... And I do wonder whether it depends on the experience of the person examining the scans as well?

[Hedgehog_1 in reply to mrskiki]

Hi, yes I also wondered about the experience of the person doing the mri and whether we have the same issue as when general gynaes do a laparoscopy and miss things. It sounds like it Is partially useful but until they get in there they don’t know exactly what they are dealing with. Hopefully now they are more aware of what your situation is they can line you up with someone specialist to complete the surgery. Best of luck x

[Bluegem85]

I cant answer your question fully as my journey is a little different to yours. I had suspected Endo symptoms identified Feb last year and was told I would have a lap in April. Due to covid that got cancelled. I then ended up in hospital with pain in June where they discovered a large cyst (10cm/4inches) attached to both ovaries (kissing ovaries apparently). I was then told in July I would receive an appt soon but in August I collapsed and rushed to hospital. I had emergency lap as cyst had ruptured. Apparently they also found a 2nd cyst too along with stating i have stage 4 endo. I was in hospital for 5 days and the plan was to see me again in 4 months. Fast forward to October and I start to get pains again that seemed to effect my bowel too. Had a scan in november which identified I have another 10cm/4 inch cyst grow back in exactly the same place. I had an MRI done on Friday last week and depending on the results, I will either be seen at one hospital for another lap or seen at a different hospital with bowel specialists for a lap. Im just hoping that the recent rise in covid doesn't cancel again as I'm struggling to cope through each day. I will ultimately end up in a&e if is cancelled but its not ideal as the emergency unplanned laps just deal with the emergency in hand. At the moment she has said it will be a planned emergency lap so that they can try and remove as much scar tissue as possible. The gynaecologist told me that the MRI should show up more advanced stages of endo but until I'm given the results I cant answer your question. How long ago did you have the MRI? Wondering how long i will wait for results. Keep us posted how you get on xxx

[Hedgehog_1 in reply to Bluegem85]

Hi, I only had it last weds and they said a couple of weeks for the results. Sounds like you have really been through it 😩 I really hope you can get your procedure once they get your results back. The fact it’s classed as emergency is hopeful. Let us know how you get on, good luck xx

[Bluegem85 in reply to Hedgehog_1]

Hey, just thought I'd let you know I got my results yesterday. The cyst has grown quite a bit in 3 weeks. It now measures 14.5cm x 12cm x 9cm. It showed that the cyst is located behind my womb and putting pressure by my rectum. Which explains the pain I've been having. It also showed deep infiltrating scar tissue from the endometriosis on quite a lot of my organs, including the bowel. My gynaecologist has now made a referral to a specialist about 40 miles away. She said that a hysterectomy could be on the cards but she couldn't be sure. (I have 2 children and my family is complete). She has also suggested, in rhe short term, having an injection which effectively tricks my body into thinking its going through the menopause. It only last 3 months but it would put my ovaries to sleep in that time and I would need to take HRT. The main benefit (hopefully) would be it would slow the growth of the cyst as its the ovaries which are making it grow. Lot to take in right now and im unsure what can be done at the moment due to covid. The current gynaecologist said that they have cancelled all elective surgeries at present but they are still seeing cancer patients and some urgent emergencies. She said I would be classed as an emergency. Just hoping the other gynaecologist has the same view on it. Also hoping I hear from him sooner rather than later. Im just so worried about it rupturing like last year.

Have you heard anything? Xx

[Hedgehog_1 in reply to Bluegem85]

Ahh just seen this message. Gosh that’s a big cyst isn’t it, no wonder it’s causing you so much grief. Hopefully the injections will help and stop the growth until you can have it removed. Maybe they make it more stable and less likely to rupture. Must be rotten just waiting and worrying, I really hope they can get you in soon. Good that you have a referral to a specialist though.Best of luck with it all, keep us posted. I’ve not had my results yet. Hopefully soon. Take care xx

[Hol_N]

Hi, I was diagnosed in August with Sage 4 deep-infiltrating endo following an MRI.

When my gynae sent me for the MRI he doubted that any endo would show, as it only really picks up on deep endo - turns out I had loads of that!

I've since been sent for another MRI to monitor the growth of endo

Hope this helps!

[Hedgehog_1 in reply to Hol_N]

Thanks, sounds like it was really helpful in getting your diagnosis. I’d just like something concrete after five years of no real diagnosis. I do have adenomyosis, and ovaries sticking to my uterus plus lots of adhesions around bowel and appendix, I would really like to known the cause of all this. Hope you can get surgery with a specialist to remove yours as soon as covid allows! Take care x

[Hedgehog_1]

Thanks so much for all your answers . I’ll let you know how I get on. Take care all x

[Gwills]

Hi there, my endo is bad (very very bad). I’ve had multiple MRIs and I can assure you it does not show up on them. Ultrasounds will show up cysts but the only way to know is by having a lap unfortunately. I hope you find answers soon x

[Hedgehog_1 in reply to Gwills]

Thank you, certainly seems hot and miss whether it shows on the mri regardless of how bad it is. Take care x

[Natasha70]

Hi there I’ve had an mri and them finding stage 4 endometriosis and I had a laparoscopy surgery before that because was having hysterectomy they shut me up because had endometriosis I’ve had a meeting since mri results with gynaecologist and I’ve got to have open surgery to remove it all so can give me a hysterectomy I’ve sighned surgery papers 4 weeks ago now waiting

[Hedgehog_1 in reply to Natasha70]

Fingers crossed they see you soon xx

[macmac36]

Hi There,

Due to high BMI I had an MRI as diagnostic lap wasn’t allowed. Mine did show Endo but I think I was lucky.

[Hedgehog_1 in reply to macmac36]

Yes it seems hit and miss! Thanks , good luck x