Diagnostic lap findings- nodules

[Indi87]

Hi, I had my first diagnostic lap done yesterday complicated by urinary retention and so an overnight stay.I wanted your opinions please. They found a cervical polyp, x2 spots of superficial endo in pouch of Douglas, enlarged bulky uterus (?adenomyosis) and 1cm nodules on each uterosacral ligament. Tubes and dye test normal. Ovaries appeared enlarged like PCOS.

I had prev had an MRI which reported no evidence of deep infiltrating endo but had found a fibroid in uterus.

So when I woke up the surgeon who I had not met before this day (a more junior trainee with interest in endo) told me they had found just superficial endo but it could still explain my severe pain as you can’t correlate amount of endo visualised with pain. He said he hadn’t removed the 2 spots (which appeared tiny on the pics) as it was only a diagnostic lap. I’m a bit upset as it seems like others have had it treated at same time If there is just a little rather than having to go through surgery again.

I wanted you to please advise me on 2 points:

1) how do I only have superficial mild endo if I have nodules on both uterosacral ligaments? I couldn’t ask him this as I only saw post op notes in detail after he left (with permission of nurse) I’ve googled and it looks like nodules always mean deep infiltrating disease? He defo told me it’s just mild don’t worry “2 tiny spots”

2) he said they will discuss treatment options in clinic cos I may not want surgery to remove the “tiny spots” as this will create scar tissue and risk adhesions. In your experiences were you ever advised to leave it alone or is it best to excise however small to stop that bit enlarging (I appreciate I can still develop other spots)

Sorry that’s long. Thank you in advance.

[Christin_a]

Few points

As to if it should have been removed or not this will depend on what you signed and agreed to before surgery.

I don't think you have superficial endo. Nodules I'm pretty sure mean it's deep infiltrating. And the placement of it too. They are right the amount you have doesn't always correlate to the pain you have. But also bulky uterus is indicative of adenomyosis which is a separate condition that could cause your pain.

The fact it's a trainee is probably why you're getting mixed information. And honestly I'd be asking for a second opinion of someone who actually knows about endo and has special interest in it. Not someone whose just learning.

I'd say it's worth getting a copy of your records, and pushing for a second opinion. And research who you want it to be with so you trust what they are saying

[Indi87 in reply to Christin_a]

Thanks for reply. I guess it was never discussed if they find it what would happen but yes I agree he couldn’t have done it without prior consent although he did remove the polyp (as that was deemed to be in my best interest without consent).

I suppose it’s good he’s taken pics and documented his findings but I’ll have to hope my follow up clinic appointment is with a consultant who can interpret it all for me