Adhesions found but no active endo?

[Ck819]

Hey,

So I had my lap last Friday to go in and diagnose and treat endo (if any was found).

When I came round It was explained that my womb and bowel were stuck together with adhesions. However, they were only able to partially separate the two organs without causing more damage to the or something like that.

On my discharge notes it says there was ‘no active endometriosis noted’ but I had ‘division of adhesions’.

Has anyone had a similar experience? Do I have endo? If you have had a similar experience/results and this is endo, what stage did they put you at?

I do have a follow up with the surgeon in 3 or 4 months... But I’m someone who just likes to know everything that’s going on. The first thing I asked after awaking up was what they found and what they did - the poor little nurse was saying I won’t remember anything just now and they’ll tell me everything in a while. [I did in fact remember that convo and what she told me had happened, haha!]

[Rosabee20]

Yes, similar experience 20 years ago. Diagnosed with “suspected endo” unconfirmed by the lap. Doctors explained it could be between or inside organs. It’s annoying because I can’t say I have it or not. And when I get really Painful episodes I just Can’t answer why and don’t really know what to do

The good news is I was 18 then and now I’m 38 and I hardly ever get the pains like I used to. I’ve had two healthy successful pregnancies (2nd was geriatric) although both were cesareans for their own reasons. I need to find out if my placenta infection and rupture was possibly to do that in the second pregnancy? Apart from that I also suffer dyspareunia.

[Ck819 in reply to Rosabee20]

Hmm... all I got was that there was no ‘active’ endo. They didn’t say something along the lines of ‘no endo found’ anywhere which is why I’m questioning it

It’s good to know you’ve been able to have children! Although it’s in the distant future, I would like to be able to have children one day if I can!

[Simo7]

I hate it when they do the ‘you won’t remember anything’ : I always do and I’m sure it’s because they don’t usually know anything!

There’s no such thing as active or inactive endometriosis - they either found some or they didn’t. They’ve previously told me the same but I queried it with a specialist and he stated that it’s either present and they’ve not recognised it or they’ve not found any. You need to contact your surgeon and and ask if endometriosis was found or not. I challenged one surgeon on this as he’d stated I had inactive endo’ but he’d also ablated a utero sacral ligament for deep infiltrating endo (General gynaecologist Shouldn’t touch your utero sacral ligament as it’s supposed to be dealt with by a specialist). I’m not sure about adhesions, if you’ve not had a lap’ before then what caused the adhesions? I think they’re usually only present if there was endo or if you previously had problems or surgery down there. Check that though as I’ve always had stuff stuck to other stuff but I’ve had lots of operations. Think positive though and get well soon and enjoy being well! X

[Ck819 in reply to Simo7]

Yes, that’s what I thought. Endo is endo whether they class it as inactive or not?! 🤷🏻‍♀️

I’ve had no previous surgeries or anything for this, this was my first one. So for them to say that it was completely stuck that they could only partially separate them Had me questioning it. I’m also assuming if it was stuck they couldn’t check behind my womb [if that’s the correct wording for it?, sorry I’m new to all of this!]

I’m definitely going to go into the post op appointment as prepared as I can be with questions and also ask to see the pictures if they took any.

Can I ask where in the UK you are based, please?

[Simo7 in reply to Ck819]

I’m in Essex. Yep your best bet is to educate yourself and advocate for yourself with this disease. Fingers crossed Whatever they did get rid of will make a difference to your pain. Wish you well xx