I've had another disappointing appointment post-Lap, where I again didn't see my actual consultant. This is in general gynae. The only thing I know is that they found one patch of endometriosis in my Pouch of Douglas and diagnosed Mild Endometriosis. I have been on Decapeptyl for a year, I'd had twelve injections by the time I had my lap 6 weeks ago. I want to know is this enough to be referred to a BSGE endo centre or would your PoD need to be at least partially obliterated for that to happen?
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atealdeer
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No this isn't enough as that refers just to endo on the peritoneal lining . The POD is a space lined with peritoneum. It is actually one of the most common locations for endo from mild right through to the severest stage 4.
Did you have a scan before the lap as endo can be deep beneath the POD and not visible at a lap?
I would get a copy of the lap report in case they mentioned adhesions which could actually be deep endo. They have 28 days to get it to you. Go on the hospital website to see if they have a section that comes up under 'Subject Access Request'. I would ask for everything they have, so colour photos if taken, histology reports and reports of any scans or previous laps you have had. Basically everything.
This BMA guidance is useful but feel free to message if you need more help as I have written a straightforward file on how to get records. x
Thank you for replying, Lindle. I hoped it would be you. I didn't think it would be enough, but as the PoD is between rectum and vagina then I didn't know if it would just count as recto-vaginal and tick off for a referral to tertiary. This was my first lap after years of being ignored. I have seen four colour photos of my lap. I haven't had an MRI for this, but the last TV ultrasound I had, the man doing it talked about the sliding sign and said things weren't moving the way they should be.
You saying it's possible to have endo deep beneath the PoD and not visible has made me feel less like I'm just neurotic. The only physical examination I've had was a quick look around with a speculum inserted, so no one has even felt for nodules, even though one of my biggest symptoms had been cyclic pain in the rectum. I did ask for an MRI, or even just a referral for me to have one privately, but they said Lap is best and I've had one so would just be wasting my time and money. Surely that should be my choice. I left feeling very dejected!
You need all the information you can get so apply for all your records and we can have a look. In particular the report from the ultrasound that tested the sliding sign is likely to be very important.
'Rectovaginal' in relation to endo doesn't refer to a location as such but to the type of deep endo in that location. So rectovaginal endo by definition is always severe as it is the fibrotic nodular type.
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