Retroperitoneal Nodule .Anyone experiencing?

[K2023]

hi,I was diagnosed in June ,now waiting for multidisciplinary operation.My symptoms started September 21 .I have had constant pain in several areas ,but for the last few months my lower spine is unbearable and it’s now spread to the right hand side not going down my leg or bum so not thinking sciatica unless it doesn’t always go down,but just wondering does anyone have experience of a retroperitoneal nodule and symptoms..Iam reluctant to see a GP as I went in December regarding issue I’ve had since sept 21 with my stomach and digestive system and I was fast tracked for cancer endoscopy ,it seems everytime I go they fast track me ,they don’t hear me when I tell them all the symptoms came together and she disregarded me trying to mention my back .I have a big mass adhesion on large colon and the retroperitoneal nodule is around my ureter but it has been diagnosed as not bothering the ureter .The surgeon said my anatomy is badly distorted ,but said I wouldn’t be having a hysterectomy unless I wanted one ,I’m not on hormone or prescription pain relief .I have a small endometrioma on left ovary but surgeon said no active endometriosis .I have had 4 laparoscopies over a span of 30 years as I was diagnosed Endo and polycystic ovaries at 17 years old.I keep ringing the secretary as my operation will be done in Bsge clinic and as of December I’m still 3rd on the list and surgeries aren’t starting until February,so frustrating as my life and peace of mind is on hold.I can’t seem to settle on what this mass is ,I have asked and asked is it sinister my consultant said flat out no ,but don’t see how he can be sure without histology and the urologist consultant said it’s leaning towards endometriosis,how if it’s not active .Sorry I’m going of on tangent .

Any help would be appreciated.

[Lindle]

You have severe endo and this is called fibrotic or nodular disease, so the term 'nodule' applies to deep endo. So don't worry about the word.

Severe endo is most commonly rectovaginal - affecting the area behind the uterus. This can be contained within the peritoneal cavity, for example in the pouch of Douglas (a space between the back of the cervix and bowel) which can commonly become full of deep fibrotic endo.

The uterosacral ligaments that run on the top of the POD are also usually involved with rectovaginal endo and disease can then extend behind the peritoneum to various areas, especially to where the ureters are. This is then called retroperitoneal. Fortunately it seems that the nodule that has reached your ureter is just surrounding the ureter rather than infiltrating it.

So try not to worry as the nodule around your ureter is by its nature a retroperitoneal nodule and this is very common, if not inevitable, with extensive severe disease.

[K2023 in reply to Lindle]

thank you so much . I have spent months re reading my notes and feeling dread when he said to the nature of which iam unsure “and when you type retroperitoneal nodule into Google it brings up all the sinister scenarios of it and not many are benign.Phew im glad you have explained it and though I don’t have active endometriosis it must be something that has arisen from it after my last operation 6 years ago. I just couldn’t get my head around no active Endometriosis how does it become so severe without it .

[Lindle in reply to K2023]

Whether endo is active or not is quite controversial but severe nodular endo such as you have is mostly fibrosis which is diseased scar tissue with very little in the way of endo itself. But it gradually progresses to form more and more fibrosis which builds up and is what the nodule is made of. This can reach a stage of non-progression, and if scans show it isn't increasing then it can be called inactive. Histology will often be negative too because a given sample doesn't always contain any endo. Fell free to DM if you need any more info. x

I see I gave you the link to a group I run so don't know if you joined, but you'll find it in our previous private chat if you want any more help.

[K2023]

I can’t thank you enough , it’s starting to make sense . I did join ,I have read many of the threads and found just being part of the site very helpful and supportive . But as the months went on I never read anything that mentions Retroperitoneal ,so I tried to figure it out and just worked myself up into a frenzy and I think with the last few months being difficult regarding all the symptoms, I needed reassurance that I wasn’t dealing with something rare or not associated with Endometriosis,especially as my symptoms are constant . Reading about all the different treatments people have received made me wonder am I endo related they have given me nothing , not anything in 30years . Your replies have been very informative and I can get my head around it a lot better now .Thank you so much .