I had the following operation on 27th September 2022.
extensive adhesiolysis, posterior exanteration including subtotal vaginectomy, reversal of loop ileostomy, appendicectomy, full hysterectomy, end colostomy and V-Y gluetal flap
I had a catheter for 19 days and now that its removed I have total bladder incontinence. I am now 21 days post surgery. I did have a scan prior to removing the catheter and they said everything was ok.
I am awaiting results of a urine dip and cultures and I am seeing my surgeon on Friday but I am really worried tha this is going to be permanent.
1 has this happened to anyone out there
2 Any advice on what you can and cant do after subtotal vaginectomy
3 I am really struggling to get incontinence pads that fit and are comfortable, any advice please
i had 5 weeks chemo radiotherapy prior to surgery and I am currently waiting to see if I will need more chemotherapy
Many thanks for your help
Hi bposotive
Oh my goodness, that a lot to go through! I’ve had a total pelvic exenteration so lost my bladder, and therefore don’t have the same issues with incontinence, but I would say you are very soon out of surgery and have a lot of healing to do, so try not to expect too much. I am in contact with other ladies who had the posterior exenteration, so I am aware that they suffered issues with bladder incontinence following surgery, and it took time to improve. I’d be reassured by the scan saying things looked ok.
I’m not sure of what you’re looking for with your second question, sorry. As part of my surgery my vagina was removed, so I am left with what’s called a vaginal stump inside. I’m not sure what a subtotal vaginectomy involves, so could you be more specific in what you mean by what you can and can’t do?
Incontinence is very distressing and debilitating-I know from the times when my urostomy products fail and I’ve had periods of constant leaks. But it took me months to recover from my surgery, so don’t underestimate how long it takes for things to heal and improve. Sorry, I don’t think I’ve been much help to you here, but I’m happy to try and advise as much as I can based on my experience. I also have an end colostomy-how you you managing with that?
Sarah xx
Hi bposotive,
The same has happened to me. I had a posterior extenteration in August and have suffered bladder incontinence, my pelvic floor was completely numb and I couldn't even feel the wee. My surgeon says it is due to the nerve endings being cut which will regenerate in time, he seems to think the bladder issues will resolve in time. I'm now almost 3 months post surgery and things are starting to get better, I have feeling in some areas, I can feel a very faint need to go and I now only wear pants/pads at night. I still can't really tell when my bladder is full, (anything over will just leak out when I stand) so I make sure I empty my bladder every hour or so and I get up a couple of times in the night.
It's early days and I'm still healing, it's a huge op and we need to be patient. Hopefully things will get better in time.
I used the pants in the beginning, the asda ones or tena are quite comfortable.
My surgeon also said radiotherapy will have had an impact on the bladder as well.
Look after yourself. Xx
Hi Star74
Good to see you again-I should have tagged you in the post too! I was thinking of the ladies in my Facebook exenteration group rather than anyone here as it doesn’t come up too often. I’m glad to hear your issues are improving-how are you feeling generally? It is such a lot to go through and sometimes we want to be able to do more than is possible for us due to the nature of the surgery anD how long it takes to recover. Hope you are doing well.
Sarah xx
Thank you.
Gosh you have been through a lot yourself.
I am terrified that my bladder won't work again so this is what is making me impatient with my recovery.
To be honest I don't really know what I mean about what I can and can't do because of the vaginal surgery, I was too scared to ask the surgeons prior to surgery. I guess I am wondering if I will actually have any feeling there
Many thanks
Hi Sarah,
I'm very well thanks, had clips out of tummy which is healing well and adjusting well to stoma life. Still have an open wound and stitches in the rear but going to see my surgeon in a couple of weeks, it is healing but very slowly.
Still numbness down below and down the front of my right thigh but I'm feeling good in myself, I'm amazed at how long it's taking to recover though, getting worn out quickly, my body just won't do what my mind wants to!!
Had liver MRI and all is good nearly a year on from resection. Full body CT scan coming up, keeping everything crossed and hoping to hear those 3 magic letters!!
Michelle xx
Oh Michelle, I really hope you hear those magic words-you’ve been through so much. Really good to hear how well you are doing now but I think we all maybe underestimate the recovery time we need after something like this. One useful piece of advice I was given before surgery was not to expect recovery to be linear, and to accept that sometimes you can feel you’re taking a step back. I thought I was doing really well, and a friend sent me a beautiful box of afternoon tea for my birthday. I was so unwell after eating the quiche and realised I had to be more cautious!
You are doing amazingly well!
Sarah xx
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