What has been your wait time between diagnostic lap and follow up procedure? (stage 4 bowel endo)

[lou840]

Hi, I was wondering what kind of wait period you ladies had between a diagnostic lap for endo and having follow up treatment? I have deep endo of the bowel and been waiting 3 weeks for the MRI results (lap with 4 weeks ago) but know once i have the results I'll have to wait for the follow up appointment with the gyno to discuss treatment options- cant see this happening this year!

Be good to hear how long your wait has been as I am going crazy checking the post every day for a follow up appointment letter.

[luthien]

I know it's not much help but I had my diagnostic lap and removal of endo lap plus hysteroscopy and biopsies all in one - my specialist wanted to just get in there and sort stuff out before discussing next steps - so I was in less pain and reduce symptoms as soon as possible.

[lou840 in reply to luthien]

thanks for the reply, i had hoped he could remove it at the time but he needs a bowel specialist to work with him. Hope your recovery has been ok.

[luthien in reply to lou840]

mine needed a bowel specialist so they did all the stuff not on the bowel first with the diagnostic then had a second op to remove the stuff on the bowel about 9 months later.

if you're sure you want surgery to remove endo as a first part of treatment; see if you can have a chat with your specialist surgeon and push for that, he / she will be able to arrange the surgery with the bowel specialist and possibly have a date for an op sooner. They may want to discuss hormone treatment for you to try for a few months for a year; if that's not what you want then you may have to be proactive and let them know first. if they still want to see you to discuss results then that's okay, at least you've said what you'd like to happen so they could start the ball rolling from now rather than from the time you go in to have a chat.

Hope that makes sense x

[lou840 in reply to luthien]

Oh right! Yes makes sense thank you, two surgeries in 9 months is tough, hope you are doing ok post surgery.

I did give him permission prior to lap to do whatever he needed to on the day which was meant to be helica but no endo was removed as there was too much deep endo going on. Wish he had unstuck the organs though, getting a cold and sneezing is one big ouch lol.

I had a jaydess coil fitted at the time of the lap which i requested prior to knowing i had endo but this was for contraceptive reasons rather than for endo although Ive read it can help, tbh being contraceptive free the past year was actually less painful (tho still bad) then the past 15 years on various coils and pills.

I just noticed in the letter that was sent post lap says he will discuss his findings in the next EMDT meeting to decide on management. Heres to hoping they have these meetings reguarly and not quarterly! Yes definetly want the ball rolling, thanks for the encouraging support x

[luthien in reply to lou840]

Sounds like you're doing all the right things

I'm doing good, just had my 4 months post op follow up, and all signed off, yay! Specialist thinks it should all be fine for up to 5 years. He's been very thorough with everything, it's been a tough 12 months but now I can focus on my life

[lou840 in reply to luthien]

Thats brilliant news!! Must be a huge relief to get signed off, yes you definitely deserve to focus on life now after going through such a tough time

[EmilyMay9]

I have the exact same as you at the minute, waiting for a follow up appointment for stage 4 bowel end I just want it sorted as soon as possible ☹️

[lou840 in reply to EmilyMay9]

Sorry to hear that you are still waiting too. Hope you are doing ok x