Hi. My husband had his bladder removed  and everything has changed

I’m new here. My husband had his bladder prostate etc removed in October 2020.

we have no intimacy anymore. We are both grieving what we’ve lost. (Though for me it’s far more about the lack of physical closeness).

He has never been so good with showing affection other than the link it had with sexual intimacy. Now all that has gone. He tried once after taking viagra but decided it wasn’t the same and doesn’t see any point in trying again. He says he has lost all interest in sex and is quite happy about that with how things are.

he has now started sleeping on the settee in our upstairs TV room most nights rather than in bed with me.

he suffers from bipolar and the depression has been particularly bad over the past six months. We’ve both been up and down and suicidal at times. On bad days he just stays in bed or watches things on his mobile and blanks me.

on better days we chat and seem OK but i don’t feel loved anymore. I’m the one instigating any hugs. If I ask he will hug me but it just feels like we’re siblings or friends. I miss what we had and feel so lonely. I’m losing sleep and crying alone because he won’t talk about it and refuses any form of counselling or couples therapy. I don’t know what to do anymore. I love him as much as I ever did but I don’t feel attractive to him anymore. I don’t feel the love is reciprocated. Sorry this is long. I’m just so sad and desperate for help. 

  • May I suggest that advice from  Urology Clinical Nurse Specialist may turn things around for you both- viagra didn't work for me, but a pump, or MUSE would be worth trying, as being better than Viagra for many people - I understand that some degree of arousal is neede for V to work - other options work without that !

  • Thank You for your response. He won’t talk about it at all with me or anyone sadly. It wasn’t so much that viagra didn’t work at all. It was that it didn’t give him the same experience as he used to have so he would rather just give up all together now he’s lost the ‘urge’ which he views as a good thing. 

    He wasn’t even going to tell me that much..just assumed I would be fine with it. 

    He hates discussing anything too deep and shuts people out it they pry too much. 

    He used to have a very high sex drive so that was very much who he was if that makes sense. I just really miss feeling loved. If he said it was all linked. That he finds it difficult being with me because of what’s missing I might understand. But he won’t explain so I don’t really know who I am to him anymore. 

    it’s all unbearably sad. I have no one to discuss this with. We’re only 52 

  • Hi Lonelygirl,

    what a sad situation you and your husband find yourselves in. Such a shame you have no one to discuss this all with.

    Well done for reaching out into this forum in such a honest open way. I'm sure you'll get some understanding and support and maybe some good advice too. People here have been through all sorts of emotions and difficulties along the path of their illnesses and operations. I would advise you to keep posting on this forum as you are currently until you find better help. To express how you feel, to unpack some emotions, really can clear a way to help you cope better.

    I will say that your husband has gone through a hell of lot in the last couple of years physically and mentally. As have you by his side. It sounds like it has hit him hard too. Being someone who shuts things out rather than talking can make things so much harder and heavier to carry and to deal with. I have no doubt he is in a very different world (inside his head) than he was just a couple of years ago. 

      Your relationship has changed now. There are many other ways for you to connect. To feel loved. And to feel together.

    I am no expert, but i was touched by your plea for help, and i would advise you (while still posting on here) to seek help through macmillan who have a counselling service that you can ring. To talk things through so often helps.

    I do hope things improve for you but i think you have to look at this as a long term goal. Time. Give yourselves time as you look into the future. 

    Best wishes ....Del.

  • Thank You for your kind words.

  • I’m so sorry for you both. 

    I'm 10 years older than you which will make a difference but perhaps my experience can help. My prostate has been a problem for many years. In January 2020 I was prescribed Finasteride. It did nothing for my prostate issues but it completely knocked out my sex drive. My wife had been suffering from a series of UTIs so was not fussed about the lack of sex. Relieved perhaps. I bought some Viagra. Four pills. I joked that it was a year’s supply. There are still three left. It sort of worked but was not satisfying for either of us. I think the arousal problems caused by the Finasteride are now mostly in my head. It is two years since I stopped taking it but I am still a long way from being normal. We are still intimate but not as often. Penetration is not yet possible but I do get vicarious pleasure from the closeness. I often sleep in the spare room to spare my wife from my snoring but always join her for the half hour before the alarm goes off. We have a long sleepy cuddle. It is the best part of my day. I love her more than ever.  I hope we will be able to have normal sex again one day but if not I can deal with the way we are now  I think we have both reset our expectations. I suspect your husband loves you still but may feel pressure to perform. Tell him it’s OK. It is not an easy issue to deal with. We seem to have found equilibrium. I hope you do too.

    I wish you all the best  

    I had a prostate operation in December. I was dreading it but boy was I lucky I did it as they found a tumour in my bladder. It would probably have been another year before I had any symptoms. Hopefully the treatment will be successful. I’m not looking forward to it very much though.

  • I’m sorry to hear about your health problems and hope things go well for you. I think how you describe your situation would be perfect. I miss the closeness because my husband doesn’t seem at all interested in any affection. It makes me sad because then I question was it really only all about the sex for him? He doesn’t feel any pressure from me to perform as all I really need is to have what you say you are giving your wife. I try to talk to him but he gets defensive and won’t talk. I know he’s struggling with how things are for him now but because he won’t talk I’m left to fill in the blanks which for my brain is not a healthy thing for me. 

    thank you so much for sharing your situation. I find many people are not willing to talk about this sensitive topic which is a shame because it makes me feel so alone in this. It’s not the act I’m missing so much as who we were as a couple.

  • Hi Lonelygirl,Welcome to the group.I’m sorry to hear about your situation.It’s just a thought but do you think your husband might be willing to write down how he feels ? It might help.I hope by joining this forum you won’t feel as alone.Love and best wishes Jane

    1. Thank You for welcoming me and for your suggestion. I’ve tried emailing him about this but he kept his reply very blunt and said he didn’t want to talk about it any more. So…that’s that really. I know from how he’s always been on dealing with any emotions (his or anyone else’s) that he won’t discuss it or open up any more. If I get upset in front of him he just sees that as a problem that he is causing and he gets annoyed about it. I’m finding it hard pretending to close family members (some who live here with us) that everything is fine. I don’t know how to continue like this. 

  • Big hugs,I feel for you in this difficult situation.Would your family members be understanding if they knew things were not good ? You sound as if you need some support right now.You are obviously doing your very best to keep communication going but you have to think of yourself too.Love Jane x

  • I think it’s the sensitivity of the topic. I feel like it’s being disloyal to him to discuss this with close family. I also don’t want them to be worrying about us. If it wasn’t such a personal thing it would be easier. That’s why I feel so alone because I think they all think that everything is fine since the surgery. They wouldn’t realise what the surgery robs people of. Neither did we. 
    thank you so much for connecting on here. It means a lot x