Pain

Hi Crazycatlady37 . Sorry to hear your wife is in so much discomfort. Not had this procedure myself but many here have and I am sure they will be along with some advice when they pick up your post. Best wishes.

Hi,I’m sorry to hear your wife is in so much pain.It is still early in the recovery process.I had right sided groin pain which was uncomfy but not unbearable.That was from the lymph node removal.Has your wife seen anyone about the amount of pain she is in ? It does sound concerning.Some aches and pains are usual but I don’t think she should be in this much discomfort.How far is she walking ? May be she is doing too much.A tip I got here was to use smaller steps and that did make a difference.Regarding discharge I had vaginal and anal discharge which stopped.It lasted for months though.The bowels can be troublesome following cystectomy.They don’t like being handled during surgery and as my surgeon said tend to go on strike.Mine stopped working altogether and it took 6 months before they were back to some kind of normality.You can get constipation or diarrhoea or a combination of the two.Eating little but often is best.The recovery is slow going it can be one step forward and two steps back but things should get better.You have to listen to your body though.If you need to rest you must rest.I tended to start feeling sick if I overdid it and would get pain so quickly stopped whatever I was doing and rested.Hopefully your wife will turn the corner in her recovery soon.I didn’t start feeling better until month 3/4 and it was 8 months before I went back to work as my late mum’s carer.Let us know how things go.We are all here to offer support.Best wishes Jane x

Thank you Jane. This is a big help. My wife is autistic so I'm fighting a brick wall when it comes to trying to get her to get help since going home. They want to give her a CT scan to check the abdomen and pelvic area but she doesn't want to go. It's a very hard battle trying to get her to get some help. I was just hoping that someone had similar experiences and that it would be OK after a few months as right now things are really hard and her recovery like you say seems to keep taking steps backwards. So your message is a great comfort. Thank you.  

I’m glad to be of help.That must be very tough for you,it does sound as if the CT is needed though as you don’t want to end up with complications and they can happen.Recovery is incredibly frustrating as it can’t be rushed.I recovered alone during the pandemic and got depressed but everyone here helped me through.I wasn’t given any information on what to expect post op.It’s not just the physical aspects of the surgery to deal with but the emotional ones too.Once you start to pick up you feel better mentally.Jane x

That must have been extremely hard for you going through all this at your own at home. I'm trying to support the best I can but at times it's extremely frustrating as I know the best thing is to get anything bigger than just post op pain checked and cleared just so we know that everything is normal. I just can't find a way around her refusing to go to the hospital again. Whilst we were in there it was that she was scared to go home and doing so well but then she came home and its like she's in a pit of depression that she won't accept help for and she's refusing all help through the hospital. I wish there was more I could do. 

Yes you definitely need to get severe pain checked.I spent most of yesterday trying to persuade my reluctant partner to phone for medical advice.I’m waiting to hear if he is in hospital.I can understand your frustration I was my late mothers carer for over 15 yrs and although she was not autistic she was so stubborn.I was always having to persuade her to do as instructed by the dr’s.It is so difficult.Depression is not uncommon post op.You are doing your best and it’s good that you are there for support.Jane x

Hii crtazycatlady37, being autistic myself I have found out something that may be of use.

7% of the whole population, but about 30-50% of autistic people, have a genetic difference. This is not the same in everyone affected, but commonly means many medications do not work as intended. Eg some pain-kilers simply do not work, or antidepressants- the list is about a quarter of all medicines! It's called CYP2D6, so maybe worth asking about. Sadly many NHS professional are unaware of this and the NHS is not currently testing for it. The USA is far ahead of us in recognising these issues.