Are MRI's accurate in seeing endo in general? To operate or not?

[Rhhh]

Hiya, I'm asking this question because I've had very negative experiences of my adhesions showing. Following one mri which reported that I had one small area of endo, I had a lap to supposedly to remove only to find everything is stuck together, stage 4 endo with frozen pelvis. I'm now waiting in limbo for colorectal and gynos conclusions although their prior letters said they both thought I was inoperable. Meanwhile, my lesions are in my sciatic and lumber regions so in constant pain and my mobility is daily deteriorated. If I had op, I could end up with stoma bags etc and make things worse or possibly even lose my life. It feels like a no win situation, you all inspire me💞

[Razina]

Hello

So sorry to hear what you are going through. MRI is considered to be the most effective to find endometriosis and pretty much anything that they find it blood or urine test. They only operate where they find it easily accessible for them to remove or whatever that has been discussed in your pre op. If endo is detected on MRI which is obviously causing you alot of pain and discomfort, they will most likely want to operate.

[Avourneen]

It depends who does the scan. I think a TV ultrasound is considered slightly better than MRI because they can try to move things and see if things are stuck together so for pelvis endo it's meant to be really good but to get a good resuly you need to see a really specialist sonographer who is trained to look sepcifically for signs of endo rather than a general sonographer. I had an MRI before my laparoscopy and it showed very clearly that i had stage 4 endo , adenomysiosis ovaries stuck under the bowel everything in the wrong place etc. But I have been told I most likely have diaphramic endo and was told by a top specialist that endo there would not show on an MRI (but told it would by another specialist). So I think you need to go to a specialist sonographer /radiologist to get a good result and consider that if you have it in the diaphragm that might not be picked up until you have a lap.

The top guy for scans in the UK is said by many to be Professor Jurkovic who woks at the Gynaecology Ultrasound Centre in London. I am sure there are many other really great specialists at this but I don't know names, one in Southampton seems to be recommended a lot.

Good luck

[catsrule40]

Hi

I had stage 4 endo with everything stuck together and a large 15cm chocolate cyst on my ovary that had stuck to my bowel. I've had 2 or 3 MRI's at various stages and i think to a certain extent they were helpful but was always told the only real way to see is to have a lap to get a good look at everything. My advise would be to get seen and treated as soon as possible. Go private if you can afford it. It is worth it to get your life back trust me, especially at the moment when waiting lists are so long. My endo got bad surprisingly quickly. Not saying that will be the case for you but the sooner you get seen the better and you'll know what you're dealing with.

The thought of having further surgery is scary i know but the benefits would far outweigh the risks from my experience

Feel free to contact me if you have more questions

Good luck xx

[Lindle]

When you say you are now waiting in limbo for colorectal and gynos conclusions are you in a specialist BSGE endo centre? Be aware that while private care will get you treated quicker, it is not always better for severe endo and there are only a few private centres. You would expect to pay a minimum of 10K.

[Rhhh in reply to Lindle]

Hiya, I'm under my local nhs but once Ive got final conclusions I intend to transfer to my nearest nhs British Gynaecological Accredited hospital which has much more up to fate equipment and specialists in endo as bad as mine. If I had the money for private, I'd have pursued a baby after 7 years trying though I guess there's many of us wish the same. Thank you for you reply.