Endo on pouch of Douglas, ureter, dilated bowel???

[Amber83]

Went for my laparoscopy follow up with gynae today. She said I have patches on womb, pouch of Douglas and ureter among other places and dilated large bowel? During surgery she didn't remove any of it just a ovarian cyst? I'm confused and unsure why it wasn't removed? Does anyone know what stage it would be either?

[squidgy]

Hi there Amber83,

They probably didn't remove for a few reasons which may include:

1. It was only for diagnostic purposes so that's all they did.

2. They were not experienced in removing the endo.

3. With it being in the pouch of douglas and bowel you need bowel specialists at the op as well as specialist in endo as it very risky and tricky removing it from them areas.

Prob some other possible reasons too. But only they know why and when you have a follow up maybe ask.

I have read that when you have endo in the Pouch of Douglas it is classed automatically as severe endo. But whether this is something drs go by or varies from dr to dr. The more organs etc it covers the higher the grading.

Sorry I am no expert. Just going by what read and experienced myself.

Hopefully you will get some answers at your follow up. Write your thoughts/questions down to take with you.

Hope your recovery from lap goes well. Sorry to hear you have been diagnosed with endo but glad you know what going on with body x

[Amber83 in reply to squidgy]

Thank you so much for your reply, everything you have wrote has made it make more sense to me now.

I have been to see my doctor today and asked to be referred to endometriosis centre at john ratcliffe, my laparascopy results haven't even got to my doc yet so doctor said she has to wait for that before she will refer x

[Amber83]

Omg I just spent ages writing a reply and its disappeared 😓

[angelyn]

Hey hun

Agree with the other replies. If you have endo on ureter and possibly bowels, you may need like a urologist/colorectal surgeon to do the surgery in a joined up approach with a gynae surgeon. They will need to plan the theatre time according to the complexity. So its a good thing that they didn't attempt to remove- means they weren't rushing and that you will hopefully be treated by those skilled enough.

I was told that they would remove what they could at my first lap. They found endo but didn't remove it. I was still in massive pain , waiting months for a follow up! Eventually got a follow up booked with a different consultant and listed for 2nd lap. So if you don't hear about your next treatment options- keep hassling them.

Defo go to specialist centre!! I wish I had done that first. I'm currently waiting for a ct & cystoscopy due to kidney pain and blood in urine. Reckon if I'd gone to specialist centre, they would have thought to check if my bladder endo had infiltrated to the inside!

hope you are recovering well from your lap and not in too much pain.

xx

[Shellfinboo]

Same places that I have endo and they didn't remove due to the complexity and risk. They would need other teams in there and also told that they generally don't laser but will cut the endo to minimise risk of damaging the urether and bowl

Hope you get your referral to an endo specialist soon

[Amber83]

Thank you everyone for your advise, it means a lot x