Healing journey - 3 months on from pelvic extenteration

Hi Kontikitoo 

You sound to be doing really well and great to have good results from your scans. I was feeling way better at this stage after my pelvic exenteration, but definitely not able to do as much as you are able to do. 

I remember at 3 months out from surgery having my first long walk round the local nature reserve and still using my zimmer-I could not have been doing 10k steps daily! 

I’ll be 5 years out from surgery soon, and I do eat and drink anything I want to and have never had a blockage thankfully, but it did take time to get to the point of not needing to be careful with food. Some things made me very sick at your stage but not now-I tried things in small amounts and left them if it made me sick. Time helped with that and introducing more things into my diet. I  find now, particular more recently, I’m not good with dairy. I do drink milk in cereal but it has an almost instant effect with very loose output. Same with butter. However I had my gallbladder out in 2023, so it’s likely more to do with that. 

I have never stopped having a slight discharge, but never had blood. I’ve been told it’s normal, and don’t expect it to change, so it’s interesting to see you’ve been told it should clear up in time as I haven’t found that. I was told to report any bleeding immediately as the place most likely to have a recurrence is the top of where the vagina was. 

I don’t work as I’m retired but I couldn’t have gone back at 4 months, even though by that time I could sit comfortably for extended periods. I still got very tired.

I think your recovery seems to have been quite different from everyone else I’m in contact with who has been through this as we’ve all taken much longer than you, and a number of us have had significant issues post surgery so you sound amazing! 

Sarah xx

Thanks Sarah for sharing your experience, we're all so different aren't we?

I've been asking more questions about how they stitch up the vaginal opening as I wasn't expecting the discharge to be as bad. I understand they do leave a small opening to allow drainage ( which makes sense) and this can heal over time , so it also makes sense there will be some discharge long term too. I don't think she was suggesting none, just a more normal amount in time. 

Thankfully so far I haven't had too many issues but the blockage is a good reminder to be more careful in general as it's easy to think you're ok.

For context, I'm nearly 50 and have always walked loads as I don't drive, so long walks have always been part of my daily routine. So hopefully that's why I've been able to build that all up gradually. I also live on my own and don't necessarily have friends or family around on a daily basis, so it's important for me to be independent, so I'm sure that's spurred me on a little too! 

After a longish walk it does feel like everything in my lower area is pulling downwards and I was told this is because you no longer have the internal support, which makes sense. So I do need to rest afterwards. But I'm not needing to nap during the day as often.

Mentally can still be really tough though. I'm generally quite an optimistic but I've still had my dark days and I'm still learning to talk to my friends more and not take it all on my own.

I'll let you know how going back to work goes! It's going to be a bit of trial and error I suspect!

My pelvic collection was very bad just after surgery-the gunk was literally pouring out but after a CT scan I was told it would be better to leave it alone to drain. Even when I left hospital 2 weeks later it was still quite bad and it was very smelly! 

You haven’t said how much leakage you are experiencing, but for me now it’s tiny. Some days I might not have any, but I wear a panty liner every day which is sufficient-it’s just some very small staining now. My understanding is that there is a little channel for drainage left there and I’ve been reassured that what I’m experiencing is normal, so I’m ok with that. 

It’s a very strange feeling having everything in your pelvis removed and I found that difficult at the beginning, turning over in bed etc. However, everything does settle in time and to me feels perfectly normal nowadays. At your stage I didn’t need naps during the day as much as I did at the start, when I was exhausted by things like taking a shower, but fatigue in general was very real as I healed. Even now I do go to bed very early although I’m not sleeping, just resting, especially if I’ve done a lot during the day. 

Mentally, I think it definitely changed me. It’s a lot to get your head round psychologically with the body changes you see every day having 2 stomas, and the fact that I no longer have a vagina even though I look no different externally. I did have counselling about a year after surgery which was helpful for me, although I think it might have been even better having this done by someone experienced in either cancer or someone specialised in psycho sexual counselling,

I did have a huge meltdown last year in hospital when I suffered a stroke-I think it was just a build up of all I had been feeling and the fact that I’d not had any real help with anything post surgery. I very much felt I had been left to get on with everything and the stroke was the last straw!  

I got a lot of help then going forward from various professional-occupational therapist, physical therapy and most importantly more counselling. That has made life easier.

Last year a blood test revealed stage 3 CKD (chronic kidney disease) but this is improving a subsequent results. From talking to others in my own support group can be common to have kidney issues after bladder removal, so this might be something for you to be aware of in the future. It has made me even more aware of the need to keep hydrated. 

Sarah xx

Wow that sounds like you've really been through it and I'm glad you're getting the support you need now.

My discharge was quite heavy to begin with and I was changing pads really frequently to deal with it. I was also readmitted to hospital for a week as the collection fluid was infected and was starting to smell really bad. So after a lot of antibiotics it has settled down again and is more manageable, although it can leak more when I'm out and about and generally moving more.

Like you I do go to bed early to relax before sleeping. I also find it helps relieve some of the pain. It's not an 'ouch' pain but more of a low level discomfort and again that has improved so much in the last few weeks. My current routine involves Radio 3 unwind and some gentle heat from my electric blanket. I'm finding it slightly easier to occasionally sleep on my side but I don't have the same flexibility and the night bag often gets in the way.

Yeah the vagina thing is a big old thing to get your head around! For the last 5 years I have been at constant risk of having a vaginectomy as my cancer originated there, so in some ways I've processed a lot of that fear. I also came out of a little long term relationship just over a year ago, right after my cancer treatment. Turns out he had been cheating for most of our relationship, so in a weird way being on my own at the moment takes that pressure off. I haven't lost all sensation though, so even though I can no longer have penetrative sex there is some hope!

What it means for any future relationships, who knows! My focus at the moment is very much about healing myself.

I have received counselling via the hospital before surgery and I'm about to start the follow up plus my local cancer centre has offered complimentary therapies, so that's already helping. 

Thanks for the heads up on kidney disease. I had to have one removed during surgery as it had already been damaged by radiation therapy, so I will now having annual check ups....so yes it's all about hydration which I can be pretty rubbish at!

It sometimes feels like it is neverending but I'm still grateful for what I do have and the sunshine today definitely helps x

I completely understand what you mean about it seeming never ending…I thought things were going well, but then was hit by a blocked bile duct, ultimately having my gallbladder out, a breast abscess, the stroke and then a referral to maxillofacial for a huge (it seemed to me) cystic lesion on my face. I was due to have another surgery for that but it was delayed due to being on blood thinners after my stroke! 

I seemed to be going from one hospital to another over 3 different counties for constant different appointments and it was exhausting! However, eventually everything settled down and nothing was cancer related which was the main thing. I have, however, learned in all of this to speak up for myself which has been a good thing! 

Antibiotics cleared up my pelvic collection infection-I had 2 lots of those and things did get much better thank goodness. I don’t really give it much thought now as I’m so used to having this very small amount of staining on a liner and have been reassured that it’s normal.

I sleep on my left side and find that more comfortable-it’s easier to lie on an empty colostomy bag than a quicker filling urostomy bag, although I do lie on the right side of my bed and have the night bag on that side. I find it difficult to lie on my back as I have a lot of problems with my hip so I am never without a hot water bottle in bed, even in the summer! I must be the only person who had a hot water bottle in the Maldives! But I find it very soothing for the discomfort from my hip pain. 

I’m sorry you had to lose a kidney too-that happened to a friend who went through the exenteration surgery, and other friends have needed nephrostomies and stents. It’s tough. I hadn’t experienced any kidney issues until it came up on a blood test last year, but I had monthly blood tests for a time after that and my doctor is ok about how things are now. No more appointments for me for the moment! I am not good through the day at drinking water but take 1.5 litres to bed and drink that over the course of the evening before I go to sleep. 

Take all the help you are offered in terms of follow up support-things like complementary therapies can be really good for our mental health and feeling better about ourselves. You’re right to concentrate on healing yourself mentally and physically as a priority now so keep on going-your progress so far has been really impressive!

Sarah xx