Has anyone had a joint surgery?

[Chocolateymouse64]

Hi, I had a scan and an appointment with my consultant earlier this week. I have to have more surgery but before they can operate I'm being referred to a bowel specialist. My endo spread is quite far up my rectal passage and my intestines. They want to investigate if it is internal before operating but either outcome I've been told that I will need to have a joint surgery. I've tried asking what they mean by this and how it will work but no answers. I have been told (not for the first time) that part of my bowel system will need to be removed but the extent will be determined by the bowel surgeon. I was wondering if anyone has been through this procedure or been told that it's a possibility. Did it help and are there any complications? Trying not to think about the worst case scenario until I've had the other investigations, as that just scares me, so trying to keep positive.

[TennisAM]

Hey, I'm in the same position as you, I have endo in my sigmoid (at the very least) and have had endometriosis go all the way through.

A joint operation means that the bowel consultant will so their bit (resection if that's what you choose) and the gynaecologist will do their bit.

My bowel consultant has referred me for a diagnostic laproscopy to see the extent of the issue. He will then give me my options (resection/wedge etc) and then the actual bowel op will be done in another operation. My Gynaecologist should be there in the first op to excise everything else.

Not all bowel consultants work this way. A lot of women have improved symptoms, reduction in pain, no pain etc. The thing that may happen is a change in bowel function. So going to the toilet more often. They will explain all of this to you when you speak with your bowel consultant.

Hope that helps

[Chocolateymouse64 in reply to TennisAM]

Thank you for the information, sorry to hear that you are going through this as well. Is it long before your referral? Xx

[TennisAM in reply to Chocolateymouse64]

Thanks, I've mostly accepted it. What I can't get my head around is how emotional I feel sometimes because of endometriosis. I try not to be self critical but it's tough.

When I had my appointment they said a 2 to3 months wait. The doc I spoke with wasn't the consultant so think I'll phone admissions to check what the wait time is. The doc wasn't that reliable 🤦🏾‍♀️ but my family have been treated by the bowel consultant so I'm happy that we know he's great.

Do you have an appointment booked for your bowel specialist? Try get on his operation list, it will be a lot quicker xx

[Chocolateymouse64 in reply to TennisAM]

Oh no! Yes when you have to chase up appointments and then you find out that they haven't sent referral letters is a common one! I'm seeing the bowel surgeon to discuss in two weeks time, I was lucky in that my consultant booked it for me straight away I didn't have to go back to get the GP to do the referral (partly as it's joint and he's worked with him before). Then not sure what the wait for investigations and surgery will be I think it's about 2-3months but will find out more when I see him.

I have been more emotional more recently. If you would like to chat about anything anytime then I'm happy to xx

[TennisAM in reply to Chocolateymouse64]

Thank you. Happy to chat anytime if you want to 😊

This is what happened when my Gynaecologist initially referred me, the letter never got to the bowel consultant. Had to ask for it to be sent again. Delayed by a month. Why they write letters in this century and worse still they post them within the same hospital 🙄 😂

Xx

[Chocolateymouse64 in reply to TennisAM]

Yes and when you go for blood tests and they send results by post or to your GP so your consultant can't access them.... I thought things were meant to be electronic now.... xx

[Ronsk]

Hiya, a few years ago I was told I needed surgery but would need a bowel surgeon too due to extensive endo now up as far as my kidneys . Due to all the complications ie ruptured bowel, bladder, etc ,I decided then was not the time for that kind of surgery and opted to continue on pain meds and then decapeptal etc etc. That was probably 8 years ago. I've been on and off decapeptyl and for the last 3 months I've been trying to convince, if I don't conceive this month I've to have another lap yo check my tubes are not blocked, however I'm a little worried how bad things have got in 8 years, my ca125 is 60 which is slightly higher than its been so thats another worry..really hope you get the answers you want.

[Marcia71 in reply to Ronsk]

Do you mean you e been on Decapeptyl for nearly 8 years! It’s only licensed for use for 6 months. And if endo was as severe as you describe it can put your kidney at risk. Please go back to consultant and it needs to be a bsge centre to get more advice as I expect you’ll need endo treatment to help you conceive.

[Ronsk in reply to Marcia71]

Hi , no I've had 3 different types throughout the years but only for up to 6 months at a time . I get pain at that side of my kidney, it was only found after another operation. On mri it looks like part of the kidney is missing but its not.

[Marcia71 in reply to Ronsk]

It’s still only meant to be six months in your lifetime. That really doesn’t sound good about your kidney and hope they can help you.

[Marcia71]

I have had that type of surgery twice now. The joint approach should be done at a bsge centre and means you’ll have at least 3 surgeons there. Usually two gynaes and a colorectal surgeon to do the bowel part of the surgery. I was lucky and endo hadn’t penetrated my bowel but it had stuck it to my pelvic wall so had to be released twice. I was told there was risk of a bowel resection but I was lucky and it didn’t happen.

[Chocolateymouse64 in reply to Marcia71]

Thank you for your reply. Sorry that you had to have two surgeries but glad to hear that it had not penetrated your bowel. Did they do a colonoscopy before you had surgery or straight to surgery?

[Marcia71 in reply to Chocolateymouse64]

I went straight to surgery but had met colorectal surgeon before. Good luck.

[Chocolateymouse64]

Hi, a little confused by your question