Want to say thanks to you all for words of advice and encouragement on here. Have been reading lots of other posts and am amazed by the level of support, quality of advice and words of comfort on here. You are all amazing ❤️
I'm off into hospital on 27th of this month (Dec16) for bowel prep for op on 28th. Never really been scared of an operation before but as this one is going to be my longest by far (I've been told it will take 6-8 hours at least) and the fact that it needs three surgeons with so many possible outcomes when I wake up, I'm scared. Don't want to talk to my family about being scared as they're all scared and anxious enough for me that I don't want to add to that. I keep smiling and telling them not to worry, I'll be fine....but I'm terrified.😱
I have stage IV endo with cysts and mass in pelvis (which they are pretty sure is just a chocolate cyst - gathering of old blood from bleeding endo) which has adhesions to bowel, bladder and vag. Prolapse x 3 also (hopefully) going to be sorted in the same surgery. Ovaries going to be removed too as I've already had sub total hysterectomy and the ovaries have cysts. They hope this will slow/stop new endo forming.
As they have to tell you all possible outcomes, I was told I could wake up with colostomy, drains, no prolapse repair etc etc etc. They didn't say what they are hoping to actually achieve in the best case as there are so many variables despite having had a lap and MRI pre op. I think this is what is scaring me. I have no idea what they will be able to do as they are concerned that, due to the extensive nature of the endo, there might be nowhere to place mesh for prolapse repair that hasn't got a wound where endo will have been removed.
However, even with the uncertainty, I can't wait to be endo free and start next year getting better.🍾
Thanks to each and every one of you have fought your own corner to get to where I am now. You have helped me to get through my waiting list time. I wish each and every one of you love, light and life for Christmas and the year to come.🎄🎅🏼
Big love, G ❤️
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Gweeda
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Hi Gweeda, a big op indeed. I am facing a far simpler bowel connected nodule op next year and am already terrified so totally empathise.
Most surgeons are incredibly cautious in such surgery though, so I am sure they will be so very careful that the worst hypothetical outcome scenarios that they have to declare are extremely unlikely.
Do your best to enjoy Christmas. We will all be here to listen to you and support you. Xxx x
Thanks Starry. So did you have a good talk with your consultant then? Glad to hear you have a plan of action, are you happier with their choice?
You are absolutely correct. The likelihood is small that I will need a colostomy and if I do, it will most likely be reversible. As I said below - been looking into designer bags lol.
Having a rare hour of clarity right now. Just got an immense fear. As I'm already suffering PTSD, and my best friend lost her four year battle with ovarian cancer last month, I guess I can be a big bit over emotional at times right now. Even the thought of the noisy ward is freaking me out. Spent almost the whole of September on that ward. This prevented me from being with my friend when she really needed people. So I spent days pretending to be asleep just so no one would talk to me at times. Not an experience I want to repeat. But the sensible, in control me knows that it's just something that has to be done lol 😱
Ashamed to confess that I have done absolutely nothing , that is except an ostrich impression and buried my head in the sand about it all until the new year.
Sometimes taking time out from all of it is the best thing to do. Let's the subconscious come to terms with it before you conciously deal with it. Hope you get on ok xx
Best of Luck Gweeda be thinking of you. If it helps at all I had a hysterectomy with removal of ovaries tubes and cervix and didn't have any pain hardly at all after the surgery it was very well under control and I didn't need pain relief after either for a few days so the surgery wasn't the problem as such. My problems came after but I'm trying to get those sorted out. I may have endo on my bowels so something like what your having may be my next step if I can find someone to actually look and do it !! Ive read on a certain website of a BSGE centre in London about colostomy bags and sometimes you need to have one as a half way house kind of thing fo rit to be removed later so id recommend a look . A bag isn't always the outcome and rare that it is permanent. Let us know how you get on when your feeling up to it - lots of hugs and best wishes but I think you will be fine - where are you having it done and is it a BSGE endo centre?? xxx Just a thought and its late in the day but is there a possibility of having the hysterectomy separate from the bowel stuff. If you have the hysterectomy by vaginal laparoscopic then the recovery wont be too bad and then do the bowel after . BUt I suppose you have to rely on what your surgical team says. All thebest Carol
Hi Carol, thank for your reply. I've already had the womb out so that isn't an issue for me. The grade IV endo has covered my insides like 101 Dalmatians, and that was the consultants words! Lol. Have cysts on ovaries, numerous endo deposits and growing areas to be removed, the mass in the pelvis has adhesions to bowel and bladder and has caused a three way prolapse. They did talk about perhaps needing another op for the prolapse repair but are hoping to do it all at once. Bowel and bladder are also covered with endo. Got some beautiful pics of it though - in glorious technicolor too! They were taken during my fourth diagnostic lap at the beginning of Sept. Don't want to share them and put people off their tea though! Have already shared on the FB endo page though 😬
Unfortunately I didn't know about the NHS rule about being seen at a BSGE centre until two weeks ago! By that time I had waited on heavy doses of morphine for almost four months so I'm feeling I can't wait on another waiting list to be seen. Going ahead with my surgery knowing that there will be my gynae consultant and a further two consultants in colorectal surgery and urogynae. So far I have been pleasantly surprised by my gynae. No faith in our NHS area 'endo specialist' because he managed to remove my womb and not mention the endo so I was passed on to his colleague who is a regular gyn consultant. The 'specialist' had talked about burning the endo. You and I both know that doesn't work. Without me having to fight with my new gyn, he said the plan of action was to remove almost all of the endo by excision and only burn the tiny spots too small to cut out. So far so good anyway. Especially as I hadn't mentioned that to his learned (not) colleague.
I know that even if I do have a colostomy, it is likely to be reversible at some point. I've even been looking into some designer 'bags'. So far my personal favourites are the 'Does my bum look big in this?' and the 'Frankly, I don't give a crap!' ones. 😂 My 17 year old son is mortified at the thought though. Haven't had the guts to discuss this with my 8 year old. We lost my best friend to ovarian cancer last month and I'm trying to keep medical stuff as light and unimportant as possible for her.🎅🏼
Sounds as though you're having just as much fun as me though. Can you not quote the NHS rule to your GP and force a referral to a BSGE centre? Better to get something sorted before it gets worse. My bowel endo is the prime suspect for causing the mass. They're 99.9% sure it's just a large chocolate cyst but it is making any toilet necessity rather difficult. Get them on the case for you pronto!
Keep in touch and let us know how you get on? It's all much of a muchness with endo eh! Undiagnosed and underdiagnosed until the symptoms become intolerable. Really hope you get some positive results soon.
Hi there sounds like your on the right track. I too have had my fair share of rubbish endo centres and argumentative specialists putting the blame back on me or playing on my ignorance or just taking too fricking long!!. I'm managing to survive at the moment by avoiding my hrt for now. It was constant pain if I took it and really bad unable to get anything to help painkiller wise and I was refused anything more than I'm on ( I'm on tramadol codeine etc ).I'm going to London for a consultation with a specialist privatley in jan. Good luck I'm sure you will be fine but happy to chat warts and all if you like - carol xx
I too am at an endo centre always have been 2 times different places. My heart sank when a patient told me that she was having her endo burt off. I knew then I was not in a good place. I was just having hysto so figured that at least would be ok but like you no one is coming near with burning unless its just the really tiny bits - cant believe they still do this technique to be honest - all the best c xxx
Mine isn't an endo centre. Just my local NHS hospital. One of the nurses had said my original consultant was the 'top man' in our area. What a joke! When I mentioned the proposed treatment on the FB page, an American surgeon shared a pic of the man who introduced that technique from the 1800's for me to take him lol.
So I'm quite relieved that a slightly less senior surgeon seems to know more than the top man! Maybe the top man has just become set in his ways so having a more forward thinking guy is great.
Will let you know how I'm doing after the op. I'm sure it won't be as bad as I think! Take care xxx
Ok so I'm now post op. Still very sleepy and a bit sore. Been told my bowel is impacted. Had 2 x picolax and a small enema, then a large phosphorous enema - all to no avail. Going home later this afternoon regardless. Been told just to keep taking laxido. Op ended up only being a fraction of what they had discussed. Apparently the zoladex has gotten rid of most of the endo. Including the large chocolate cyst. I had no idea that could happen!?
So minimal endo removal, ovaries and tubes out (no drain post op!) and prolapse repair with a 'new technique' of securing the mesh to the sides rather than the sacral ligament. All in 5 hours of surgery and feel ok
Don't feel nearly as hellish as I expected and was up and moving around a bit the day after op (yesterday).
Hi Jean, it wasn't an endometrioma, it was a large chocolate cyst. These are made up of a collection of old blood from endo bleeding - or at least that was how it was described to me. This is partly why I don't understand the zoladex making it almost disappear? I could understand it not getting any bigger over the 14 weeks but don't understand it getting smaller.
Thanks for your reply though. It explains what has happened to all the endometriomas that I did have. Have seen pictures of how my insides look now and the difference is amazing.
Just showing my ignorance then lol! I obviously didn't know very much and haven't understood too well when they were explaining. Wish I'd had this site at the beginning!
Hi Gweeda! Huge hugs! I'm so very, very pleased to hear that the op went about as smoothly as it could do and that your gynae clearly knows their endo stuff so well.
Hope your bowel symptom eases up soon. I was several days waiting on mine even just with a routine ish lap and ovary ungluing.
Hey Starry! Good to hear from you. Only thing I'm worried about is that I don't seem to be emptying my bladder. Totally embarrassed to say that I wet the bed last night in hospital. Now home I went to the loo, did what I thought was a full pee and out of habit went to 'splint' for trying the bowels. Just had a full pee come out on my hand! Thank god the doc gave me gloves for splinting! Other half is away to asda to get me incontinence pants for tonight as I couldn't bear to wet the bed at home.
I had the opposite problem after my first lap - awful trouble weeing at all and no urine inside me so they worried about a perforation and kept ultrasounding me. I wonder if the anaesthetic can cause muscle issues in your pelvic floor. Have they given you advice when to go back to them about it?
I've checked on the FB endometropolis page and some are saying it can be the anaesthetic that can knock signals from bladder and brain out a bit. But still very little movement from the bowel and I'm in pain with it now. No advice about getting back to them at all! Think they were just glad to discharge me before the new year holiday 😕
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