Stage 4 Endo- complex surgery including bowel required- Need Positive stories

[Emmavk88]

Hi All

I have stage 4 endo. I have had 2 laps now. The second had to be abandoned as the surgeons couldn’t access my ovaries to remove Endometriomas and any adhesions as my bowel was in the way and stuck to my right ovary and uterus. I have had an MRI since and the results are to be discussed at an MDT meeting with specialists to devise a plan for surgery. Ideally I would be having a hysterectomy but am 34 with no children. My consultant has already said there is a risk of damage to my bowel and I am absolutely terrified of this. I would rather remove all of my reproductive organs than any damage to bowel. All you ever see are horror stories so I am asking is there anyone who was in a similar situation who can give me positive hope? Thank you x

[CARBUCK]

Hi Emmaavk88,

I'm 38 with no children. I had a hysterectomy and bowel shave 2 days ago. My consultant said it was complex surgery and my pelvis was full of adhesion, endometriomas stuck to ovary and adenmyosis. Originally he said that he may need to do a bowel resection, but they reassess the situation when they are in theatre. I'm ok at the moment with pain relief.

Everyone is different though and I understand how difficult this decision must be for people without children.

I'm happy with my decision and glad to now be on the road to recovery.

I hope you are ok and good luck with everything x

[Emmavk88 in reply to CARBUCK]

Hi, thank you for your reply. I completely understand your decision, although a tough one to make I’m sure but I hope this is the start of a much better life for you! I too have Adenomyosis. Part of me wants to just say, take it all away. I know it’s not a cure but surely it will make things a whole lot better.

I’m really pleased for you that you had no trauma to your bowel. I guess everyone’s fears are different but that is the main fear for me. Good luck with your recovery! X

[Purple_Badgers]

Hi! For a slightly different perspective, I have already had a bowel resection which went really well, no stoma required, healed up and started functioning again almost straight away. The bowel is absolutely amazing in this respect!

I will have more surgery next year, and they have warned me that bowel damage is a possibility. I think it’s one of those things they have to say, as there is a risk that can’t be ignored, but remember that these problems/complications are still unlikely. There are risks with all surgery that they have to inform you about.

They will have a bowel surgeon there to assist and hopefully prevent any damage (or reduce damage if the worst should happen) so you’ll be in good hands.

I hope that goes some way to reassure you. Wishing you luck and better health in the near future xxx

[Emmavk88 in reply to Purple_Badgers]

Thanks for your reply. That’s great to hear! I’m really glad that it went so well for you. I think your brain automatically jumps to the worst case scenario. I have been advised there will be a bowel surgeon and it seems like I will be in very good hands. You are right that they have to cover themselves and give all possible outcomes… have to just keep thinking of that. I hope any future treatment for you goes well! Xx

[Ess1982]

hi Emma, don't have a positive story (yet!) sane as you the bowel surgery absolutely terrifies me. Totally relate to what you said about 'taking out my pelvic organs!'. Once I've had my surgery hopefully I'll be able to update you with a positive story 💛

[Emmavk88 in reply to Ess1982]

Good luck! I hope it all goes well for you. Let me know when you get further on! I’m sure we will come out better the other side x

[KlP28]

Hi Emma,

I had a lap March this year. They were pretty sure there was endo on my bowel, so a bowel surgeon was present for my surgery. I was told I could wake up with a temporary stoma bag, thankfully this didn’t happen, but neither did ant removal of endo from my bowel. The endo is dotted all along my small & large bowel, therefore the only was to be free from endo on my bowel is to remove them completely. This could be a decision I make in the future.

They removed a very large amount of endo & fibroids from else where, unsticking what they had to unstick, & drained many chocolate cysts from my ovaries. A hysterectomy personally isn’t an option for me, I’m also 34 & really want children.

I wish you all the best with your decisions & your surgery. Good luck! X