Next steps??

[BusyLizzieP]

Hey,

I had my first laparoscopy yesterday for an endometrioma, but found stage 4 endo. I don’t have much info as my surgeon isn’t very communicative, but I do know that my uterus was fused to my bowel and my ovaries also had to be freed from something.

Does anyone know what the next steps for this are likely to be? I thought I’d read somewhere that referral to one of the specialist endo centres was common in cases like these, but no one has mentioned it?

I do have a follow up in 6 weeks but based on past experience, I’ve not found appointments very discursive. I’m basically just told what to do by the surgeon, so I want to go in prepared.

Any advice would be amazing!

[Lindle]

Are you in England?

[BusyLizzieP in reply to Lindle]

Yes, sorry should have mentioned that. In Yorkshire

[Lindle in reply to BusyLizzieP]

Did you have a negative scan before the lap and was the lap in general gynaecology (not a specialist centre)?

[BusyLizzieP in reply to Lindle]

I had an ultrasound that showed an endometrioma. Was referred to a gynaecologist, I know he treats a lot of endo patients but from what I can see it’s not a specialist centre. Appears to be a private health group which carries out NHS referrals in west/ South Yorkshire

[Starry1977 in reply to BusyLizzieP]

Were you at South elmsal, pinoeer/phoenix health?

[BusyLizzieP in reply to Starry1977]

No it’s One Health Group in Ossett initially but lap in Sheffield

[Lindle in reply to BusyLizzieP]

Endometriomas are almost always associated with rectovaginal/stage 4 endo but regular sonographers aren't trained to look for it. What we need is for basic training to look for the signs so that referrals can then be made direct to endo centres, avoiding a diagnostic lap.

So when severe endo is found at a lap in gynaecology they aren't allowed to touch it, they must then refer on to a specialist endo centre where it must be treated. There is a long wait in centres so making you wait 6 weeks to refer on is wasting your time.

I would apply for a copy of the lap report so you know what was found and that hopefully they didn't try to do much other than freeing a few adhesions maybe. They shouldn't really do that. They have 28 days to get your records to you so I'd apply straight away. I'll put the link below to the treatment specification for severe endo in England, but if you'd like to join a group called Endorevisited there is a file on how to get your records and they can interpret your report. x

england.nhs.uk/commissionin...

[BusyLizzieP in reply to Lindle]

Thank you, that’s so so helpful! I will definitely request the report and find out exactly what’s been done/ found.

Is Endorevisited on this platform?

Thank you! X

[Lindle in reply to BusyLizzieP]

No on FB.

[Amy2106]

Similar happened to me. I had x2 cysts one on each ovary and when they went in he found stage 4. However he had to stop the surgery as he deemed It too dangerous to continue. I was put on Decaptyl for 3 months and told I might have to repeat my laparoscopy.

My follow up with completely useless as it was mainly with his reg who had no idea what was going on. But I still had a small cyst on the right hand side. We however are going to start trying for children so have decided to leave things as they are for now.

I was also given little to no information about the operation but requested my hospital notes . Looking back I have questioned if he’s even done the operation correctly as he wasn’t an endo specialist . I have asked my GP to refer me to the nearest specialist centre and this has now been accepted although my first appointment isn’t until April. So if you are struggling you could always ask your GP to do this!

[BusyLizzieP in reply to Amy2106]

Thanks for the heads up and sorry you’ve had a rubbish experience too! I think he was talking about giving me injections at the follow up, which I’ve looked into before and I want to avoid if at all possible. I’ll have a chat with my GP and see if I can get a referral in. Thanks and good luck X