Advice on open surgery

[Dustydoggo]

Hi ladies,

I have had an MRI scan that showed extensive endometriosis… without going into too much detail, basically everything is stuck together; ovaries, fallopian tubes, uterus with adhesions to the bowels… ☹️ I’ve been told at 45 it’s best to just have a full hysterectomy (I’m lucky enough to have two amazing sons already, so that’s not a concern). The surgeon told me that he’d have to do open surgery as my uterus is too big to be operated on using keyhole surgery. He said he’d try and not touch the bowels more than he needs to but I may end up with a colostomy bag for a few months … I’m really worried about the whole thing and to top it off, I’ve got a severe type of asthma so they’re very concerned about my going under general anaesthetic. I’m in constant pain but am starting zoladex injections next week as well as some HRT so I’m hoping that will help a bit. I was just wondering if anyone had been through the whole thing and could give me a bit of reassurance? It’s o nice to see everyone helping everyone on here … so good to know that we’re not alone ❤️

[Penguins_81]

Hi, I too have severe asthma and for my op (april 2021) the team were concerned about me being ‘under’ for so long and the pressure it would put on my lungs/heart. The pre op team shoul also have you see an anaesthetist who will talk through your asthma and a plan for surgery. I had the normal general anaesthetic as well as spinal anaesthetic. I was fortunate that I didn’t need the stoma bag, they were able to shave it off my bowels for now, they saved my left kidney and appendix. I’m assuming you’re under a bsge surgeon- if not get referred to one. In March 2019, my other op converted into open surgery- the main difference is recovery, as you have basically had a c section, you’ll be in hospital longer and your movement a bit limited .

My best advice would be to tell them how your feeling - don’t feel you have to be brave, it’s a major op. I was sh*t scared and cried most of the night before. Please do talk to your team and be in a bsge centre. The difference in surgical skill is amazing when I compare my two surgeries. In a bsge centre they are used to complex cases and have the skill to do it- both in operations and in listening to patients. My colorectal consultant was so kind and patient, my gynae explained all the things that could go wrong (to make sure I was fully aware) but then went on to tell me his success rates and the likelihood. The stoma nurses were so kind and understanding.

I was put on prostap before the last op with hrt- it did help me, so I hope zoladex will help you too. Xx

[Dustydoggo in reply to Penguins_81]

Hi, thanks for your message…. It sounds exactly like what I’m going to have to go through. They have suggested a general anaesthetic as well as a spinal one to help pain afterwards. The surgeon who is doing the op is apparently the best when it comes to extensive endometriosis and I’ve had a chat with him already … he was very nice and thorough. So just got to get a date now and prepare myself ! 😬😬 xxx

[Penguins_81 in reply to Dustydoggo]

That’s good 😊 Prepare the house beforehand and fill your freezer with pre cooked dinners. Try to stay as fit as you can too. Let friends, family and neighbours help you when recovering. 💛

[MartusZgr]

Hi Hun so I had been submitted to AE June 2020. Long story short I have massive endometriosis cells in plenty of places: 10cm in small Intestine, on my rectum and colon, on top of my uterus and around my uterus muscles. Plan for me was laparoscopy to examin what's needs to be done. Now I wait for joined surgery with gynae and bowel surgeon. I was fortunate enough to move my operation to private as waiting times are killing me, since from more than a year I'm on tramadol, plus I free space for someone else. The same surgeons thought. Happy with Colorectal team, with gynae - not really - they have massive mess and I sincerely feel like they didn't care enough.

They made aware of possibly of temporary stoma bag although it would be for 3months only and Mr Von Roon promised he will do everything to prevent that.

Talk to your operating team. Tell them all concernes. Say how you feel - they are very understanding. The team's was patient enough with Me to answer every question I had. Write them all down and ask one by one before the operation.

Open surgery will be more invasive one and taking longer time and more painful to recover.

Do not rush with decision - best of luck Hun xx

[Endo_Jaded]

I have been told after waiting from 2017 with stage 4 endometriosis and everything glued, twisted and deep that I now need a laparotomy open surgery and may have to wait another 12 months due to covid bringing me to 5 years since the 7cm endometrioma was found, the pain has been on going since I was 8 got worse at 16 and excruciating at 24 by now at 34 you’d think I’d of been treated in the last four years but no, just left to suffer, out of work, missed graduate programme, my children have watched me writhe in pain and to top it all off I now have to have an open hysterectomy with the colorectal surgeon present for the bowel!! I am terrified and feel like no one understands the pain or how scary this is for us all.

Do you know when your surgery will be?

Sadly, here in Northern Ireland we don’t have a specialist endometriosis clinic or BGSE surgeons because even when we get a provisional centre it’s rare anyone gets to avail of it.. and it stays provisional for many many years! I’ve been told I’m not allowed a second opinion or I’ll lose my spot on the waiting list for surgery that I’ve waited 4 years for even though it’s “as bad as it can get” according to surgeon!!

Thank you for your advice.