Endometriosis stages?

[Rosy133]

I had my second laparoscopy 2 weeks ago and have just received a letter with notes as I never had a follow up with the surgeon. I've been trying to get hold of my consultant but haven't had a reply or follow up appointment arranged.

Can anyone advise what stage I am from the info below or does it depend on how much was found? It's not clear as it just says scattering.

Ovarian cystectomy

Scattered endo lesions in utereovesical pouch puckering with pouch of Douglas, along left ureter and right sided wall.

Thanks for the help

[Lofty1589]

So, I had a nodule on my ureter and that is typically considered deeper Endo. I ended up having widespread stage 3 removed in Feb this year.

They are starting to move away from the American staging system, though it isn’t clear when it will take effect. But I would say you are possibly stage 2-3 - it depends on how much was removed.

If you haven’t already, you can put in a Subject Access Request with your hospital and request the notes from your surgery. These are typically more in depth than discharge notes so may give you more information!

[SeedsandNuts]

Hi Rosy133,It is very frustrating waiting to hear back from your consultant.

Some options you could try ( these have worked for me):

Ring up your hospital and ask for gynae secretary's contact- email preferably as this creates a thread of emails for your records. Send an email and express your concerns.

Ring up PALS as they can help chase up enquiries.

Your gynae will be able to tell ( if you ask them) what stage you are, especially post laparoscopy. And since you've had a cystectomy, they might be able to advise what stage you have.

I asked my gynae when he came to visit me on the ward post-surgery.

I hope this helps and you can get some answers soon.

Take care.