Post Op Update

[Hanban892]

Hi Guys,

Groggy post op update. They found endo. . He didn't discuss severity (or at least I think he didn't was in recovery and out of it) they got rid of a few areas while in there. I also have adhesions between my belly button and peritoneum that he thought wasn't endo related so don't know what yhat is about maybe from previous lap chole? I didn't get the agonising post op pain I was worried about and was so happy when I woke up I cried causing much confusion to the nurses lol. They said I will have follow up with gynae but not when. Not sure how I feel now tbh I feel validated but scared about what it means going forward. X

[Marcia71]

Most adhesions are linked to endo even when doctors say not! Hopefully they took biopsies so can check. You do need to know how severe endo is and where it was found and where they looked. Once you’re feeling better apply for all your notes - it’s called a subject access request - and to the hospital direct. There is often a link on their website. Best to get them to find everything out and then you can plan your post op appointment better.

[Daughtersendo]

This happened when my daughter had her diagnosis lap. Whilst she was coming round they told her they found endo and had removed it. Didnt tell her severity, or that it may grow back just it may effect her fertility. She asked when she would see her consultant to be told she didnt need to as they had removed the issue. She was 19 at the time 6 mths later the pain was just as bad, GP refused to refer to gyne and insisted it was urine infections. We ended up paying private for her to get another lap where he said she had severe endo throughout her pelvis. She has had 2 years of relatively being pain free, but it's back again. Were now waiting for her to have surgery again. The care young women receive is is simply not good enough!! I hopeyou get some answers and the help and support you need x

[SophieEndo in reply to Daughtersendo]

Hi I’m so sorry this is happening to your daughter. This sounds similar to me right now. 25, had my last lap in December, told it won’t come back for 5-10 years and now I’m in absolute agony just five months later. Consultant isn’t bothered. Trying to seek gynae referral for second opinion. Hope your daughter is ok x