Endo spread to bowel and bladder stage

[Clairevhet]

hey . This is my first time on the group. I am looking for advice. Been suffering for years but took so long to get properly diagnosed. I had the diagnostic laparoscopy in May and only got the results on Friday. Been told as it's stage 4and spread everywhere I need a full pelvic clearance . Drs arent giving me a straight answer. it's spread to my bowel and my ovaries are stuck in the rectum they said. The surgeon had said a bowel and bladder specialist with have to be at the hysterectomy surgery. When you Google full pelivc clearance it can mean the bowel comes out too. Drs have just been very vague so I was wondering has anyone else been threw anything similar? Sorry that's long

[Lindle]

In this context a pelvic clearance means removing all the reproductive organs at the time of endo excision - so hysterectomy plus removal of the ovaries, tubes and all associated ligaments.

Following the lap were you referred to a specialist endo centre as that is where severe endo must be treated? If you are in England this is the treatment specification but the devolved boards must follow a similar plan,

england.nhs.uk/wp-content/u...

Most specialist centres are on a list published by the BSGE:

bsge.org.uk/centre/

x

[Clairevhet in reply to Lindle]

Good morning thank you for replying. I have been referred to a specialist team in The Queen Elizabeth Hospital here in Glasgow. I am waiting on the MRI now and then the surgery will follow. I've asked is there any way around it but they have said no matter what I need a hysterectomy it's just with everything stuck all they said it's complex and part of the Bowel has to be removed. Och it's suck a worry 🥺 xx

[Lindle in reply to Clairevhet]

It's so tragic when endo is left so long that it advances to this stage. That will be the specialist endo centre - I do hope it goes well. You should have been given a contact for the specialist endo nurse who should answer any questions you have.

[Clairevhet in reply to Lindle]

Thankyou . It's been a long process as you know. I only had the results last week and the diagnostic laparoscopy was on the 8th of May. My own GP just said we don't have any correspondence yet . Hopefully they get in touch as it's the not knowing fully or understanding fully that makes you worried. Thankyou again ❤️

[lol84-07]

Hi, I'm in the same boat as yourself, I had an MRI in January and MDT was completed in May and now it's just a waiting game for a date, unfortunately the complex MDT list only gets 1 day of theatre time per month so it's a long wait, I felt in limbo for so long and had no idea it was so bad until an inpatient stay where they had looked at my MRI and told me the bowel was involved, everything has been explained to me and I have contact with the team if needed through the secretary, hopefully you will soon have been through the MDT process and then they can explain, until this has gone ahead they can only give vague answers which is why they will schedule an appointment to discuss after. All I can advise is remind them you're still there, contact the secretary of the consultant, asking when you are to be discussed etcetera, I hope you get answers soon and a plan of action, feel free to message me if you would like to chat x