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

Hi Lonelygirland let me first say how sorry I feel for you and your situation. I understand how difficult this is, but from a different perspective, and completely understand that this is an incredibly sensitive topic. 

I am the one who has had their bladder removed, but along with that I had huge surgery including the removal of my vagina and rectum, so it is physically impossible for me ever to ever have sex again. The guilt that this causes is immeasurable. It’s really hard for anyone not in my situation to fully comprehend what that means to me and my partner. 

I did have counselling, but I appreciate your husband doesn’t want that. All I can say is that I found it helpful. And we do talk about it now, which also helps, but doesn’t remove my feelings of blame and responsibility for where we find ourselves now. I know it matters, despite being reassured otherwise. Of course it matters.

I feel all sorts-selfish for choosing the surgery, though I would have died without it, and so very sad that in order to live I had to give up so much. I am lucky in that we are a strong couple and very close, but this is still very hard to deal with.  

I don’t have the answers for you but I wanted to reach out and say that I understand, albeit in a different way, how life changing this is for both partners. 

Sarah xx

Oh Sarah. I’m so very sorry to hear about your situation. It is very sad to have relationships completely changed overnight which is what we’ve all experienced.basically isn’t it? It’s a process of grieving that nobody else can possibly understand. That’s what’s so lonely about it all. It’s the unspoken broken. I feel  like we’re constantly avoiding the elephant in the room. I’m glad counselling was helpful for you. I’m sad that as well as all you’ve gone through you also carry guilt. My Husband still hasn’t met anyone else with a urostomy. He wasn’t offered any counselling and certainly wasn’t prepared for all the changes to his body. It’s really knocked his confidence. 

thank you so much for bravely sharing your situation. It’s really helped me to feel less isolated in this thing that can’t be talked about. 

xx 

Dear Lonelygirl, just sending virtual hugs even though we've not met, as your situation is so tough. I wonder if you could contact the medical team who dealt with your husband, to let them know that it has been limited help saving his body if they don't do something to help his mind. If they called him in for a checkup and proactively linked him to andrology it could help. There have been quite a few gentlemen on here who have benefitted from vacuum pumps, medication such as MUSE which is a hormone inserted into the penis to produce an erection and other things besides viagra/sildenafil, all provided by the NHS. 

Also for yourself, try contacting your local carer's association, you are entitled to support as a mental health carer whether or not you are/have been a service user yourself. What support is available does vary from area to area but if you don't ask you won't find out. We go to a brilliant free art group run by a volunteer for mental health carers, and my husband also comes having been in hospital with depression. The group really lifts us both

Also why not book a double appointment to see your own GP to explain how things are?

Do let us know how things go, don't suffer alone now you have found this group.

Denby

Thank You Denby. Interesting points you make. I will look into them. We are limited as far as groups go because he is working full time and I am unable to attend anything regularly as I am predominantly housebound with a chronic neurological  illness. 

I assumed couples facing this together would have automatically had counselling but whether due to lack of mental health workers or the Covid situation at the time, this wasn’t offered. 
I think it should be but don’t know who to contact to instigate changes to the system.

Thank You so much for your input and practical suggestions. It’s so good to feel supported on here. 

Hi Lonelygirl

I think you have summed it up very well when you talk about the “unspoken broken” and the elephant in the room. I mean, who do you discuss this with? Personally, I told very few people about the surgery I had-just a couple of close friends, and not even my in laws-they have no idea I have 2 stomas, and no idea what I’ve been through, so I can’t imagine ever broaching the subject with them. None of my other friends know, and assume, I think, that I had some sort of operation to remove my cancer and that’s it! I’m guessing they might 5hink I had a hysterectomy, although someone asked about having my breast off! The assumption being 5hat I must have breast cancer because I’m a woman! So yes, I understand the loneliness very well. How do you even broach the subject of sex and intimacy with other people? It seems disloyal (which is why I found it easier to speak to a counsellor who wasn’t emotionally involved with me). He offered to speak to my partner, but the answer to that was a resounding no, so I dealt with this myself. 

I did know a number of people in advance of my surgery who had been through it, but it still didn’t prepare me for what was to come. I was so focused on getting rid of the cancer that my thinking didn’t really extend to the future and all the issues it would bring. And a number of ladies in my particular situation chose to have vaginal reconstruction so don’t have the same problems as I do. I didn’t want any further surgery, increased recovery time, potential physical issues with skin grafts etc, so I just had my surgery and thought I had accepted the trade off of getting the cancer out for no future sex.

It was only later when I had recovered and had a complete sort of mental breakdown, that I began to be quite angry that there is no psychological help offered for these life changing situations. The surgeons fix the physical and in my case seemed astonished that I needed help with the mental aspects. There is no holistic approach in place at all to help us unless we ask for it, and asking for this is hard.

I appreciate my situation is different to yours, but I just want to say you are not alone. 

Sarah xx

Yes Sarah. I think the surgeon is very happy to have saved a life and rightly so but I often think if these surgeons ever have to go through this trauma in their own bodies they would then realise what a huge important aspect is missing from the after care. 

interesting that your husband declined meeting your counsellor. It seems many men don’t like to discuss mental health.

I’m not surprised you opted against reconstruction because you had enough to go through.Do you still enjoy any intimacy together albeit differently? (You don’t have to answer this)

My Husband is avoiding anything linked with that. I assume it’s either too upsetting for him because of what he’s lost. Or he just doesn’t see the point in doing anything for me because he’s not getting anything out of it.

I guess it’s the latter that upsets me. The realisation that sex for men is far more about function and less about love. Of course everyone kind of knows this but now it’s set in concrete.  

And, yes. There comes the point of realisation that everything is different now. At first it’s about recovering from surgery and being thankful to have survived/or have your partner survive.

Then suddenly it hits you like a tidal wave and you’re drowning in this sea of grief. I think that’s the other difficult thing. Knowing as a couple we’re grieving yet no one knows this because they don’t know how life has changed.

I’m close to my Mother in Law but because she doesn’t know it all I have distanced from her at the worst emotional times because I couldn’t face anyone. Then I feel bad and want to explain but it’s not my body to be talking about.

because my husband has always suffered from depression people expect him to be socially absent at times. 

I’m glad you have some friends who know your situation but even then they can’t  fully understand do they.

I also don’t know how to get across that it’s mostly not about the sex. I could imagine at least one of my friends commenting how lovely it must be to get to sleep without being disturbed or something equally insensitive …

it’s about losing intimacy. It’s about knowing I can’t do anything that satisfies him ever again.It’s about not really comprehending what I mean to him anymore. 

It’s about grieving but not being able to see the day when the grief gets easier.

you are helping me to see how things are from the other perspective. You survivors are grieving your bodily changes as well as how the relationship has changed.

It makes me feel guilty that I get so caught up in my emotions and what I’m missing when it’s worse for him.  

Sorry this is so long. Thinking of you. It must be a lot of work dealing with two stoma’s and all the emotional stuff too and I’m sorry the medical profession are so dismayed that you’d need emotional help. Even women losing a breast struggle with how their bodies have changed yet they can still be fully functional.

something needs to change but because of the topic I can hardly write a blog post on it and don’t know who to complain to xx

Basically yes, we can still enjoy intimacy but of course it’s different, and unfortunately rare, but that’s probably more my fault if I’m really honest.

I’m very self conscious about how my body looks now with 2 bags! I have never been made to feel uncomfortable about that, but it’s in my head nonetheless. Another thing we’ve lost is the whole sleeping in the same bed thing. I’m constantly aware of the possibility of leaks or bursts from the bags, so it’s easier to sleep apart, although it’s another thing which adds to the loneliness and was my decision. It’s awful to have a burst and soak everything with all that entails-wide awake, changing everything in the night and subsequent lack of sleep.  Easier if I’m alone, but it’s hard.

The 2 friends who do know the surgery I’ve had have never broached the intimacy subject, and I don’t either-despite knowing them for many years. Even with very close friends I have found it impossible to discuss. I’ve only ever talked to my counsellor about it, and I can also imagine one of my friends saying how lucky I am not to have to be bothered with it! So I stay silent, but sometimes I’m screaming inside about how my life has changed and how much I’ve lost, when very few people can comprehend it. 

I was very ill both before and after my surgery, so sex was the last thing on my mind, and we did sleep apart for probably 4 months into my recovery as I was so exhausted and getting used to my “new normal” as everyone calls it. Then we were back together in the same bed, but for months now have been apart again. But that is down to me and guilt I feel if there’s an “accident” in the night. So a lot of our issues around this are my feelings of guilt and shame, which I know is ridiculous but which my head just can’t change despite the counselling.

I think you were very brave to make your original post and be so honest-it’s not something I could have done, but can I say how much I’ve appreciated you speaking on such a “taboo” topic and helping others like me talk more honestly, even though it’s from a different perspective.

I assumed, wrongly that there would be help psychologically around these issues, but there’s really not. I really wonder how these surgeons would feel to live a day in our shoes, either with the cancer or as the partner of someone who has undergone surgery. The focus is completely on the physical treatment I have discovered and it’s like we should all be back to normal now. I was made to feel in some way inadequate when I had to ask for help-my surgeon was literally astonished, and then it puts you back in your box because you feel you shouldn’t be complaining when your life has been saved. I’ve yet to meet a doctor who truly understands that the mental challenges can be very bit as difficult as the physical. And your feelings as the partner are every bit as valid, because this is all really hard. So, I feel you, and I feel your pain.

Sarah xx

This is such a sensitive issue.Your posts have made me think about the relationship I have with my partner.We have been together for 20 years and he is disabled with a rare muscle disease.He has other health conditions so he is often ill.We are close emotionally but haven’t been intimate since my cystectomy.My cancer prognosis was bleak and the surgery was life saving.I adjusted well to life with the stoma but became very depressed during recovery.I was alone as my mother had to go into respite care.I couldn’t look after her as usual.My partner had to shield during the pandemic so I couldn’t see him in person.I saw my sister on the doorstep once a week when she dropped off my shopping.It was tough but with the help of the people on here I got through it.I had lost all interest in sex but that didn’t matter as much then as I couldn’t see John.Now we find ourselves in this strange limbo land.He has commitments at home as his elderly mother needs his help.I’m sorting out my mothers possessions since she died in January.The house has to be sold and I have to move.I only see John briefly each week,it’s not ideal.I would like to have some kind of intimate relationship if this is possible and I know he would.I’m not sure how he feels about the stoma,he hasn’t seen it.Apart from medical staff only my late mum and sister have seen the urostomy bag.John says he could never cope if he had to have a stoma ( he has ulcerative colitis).I’m not embarrassed about the stoma but I do wonder if my partner is worrying about it.I need to talk with him about it.I do feel there should be far more discussion about how this surgery can affect a physical relationship.All my surgeon said was that the vagina would be shortened and sex might be painful.He seemed shy plus my sister was in the room which was a bit awkward.I’m close to my sister but we don’t discuss our sex lives.It is a complicated issue but thank you for posting as I think it needs to be discussed.Love Jane xx

Hi Sarah,I agree there should be help.As you say who do you discuss these sensitive subjects with.I know when I first came round from the surgery my first thought was I’m alive.My second was that I’d better start adjusting to the stoma.It was only during the recovery that it hit me,I’d had cancer and survived major surgery.I rarely talk about it off this board.I know I can talk about things with my partner and sister but I prefer not to.Love Jane xx

That was my first thought after surgery, too, Jane. Tried to feel for the bags next, and smiled with sheer relief. The whole realisation of what I’d been through came much later. I had staff come to stare at me in my hospital room as I was in a gynae ward and they’d never seen anyone before who’d had a total pelvic exenteration! Just reinforced my feelings of being very different from everyone else there, and sidelined to a separate room from the main ward where I’d been for a week. Sigh. 

Sarah xx