Hubby had surgery in March and had to have open surgery. They couldn't save the nerves and when hubby asked about me (being only 33) surgeon said you'll have to take tablets. Nothing else mentioned so after 4 months we mentioned it wasn't working and he then said nah they won't work (I think he had forgotten the previous appointment) and asked hubby what he wanted to try. We didn't know options so he mentioned the pump. That doesn't work either but I'm just upset that there is no support in my area and no one can help us get through the reality of this op. Its been 9 months in Dec. Hubby has zero libido as well. Anyways struggling mentally with it all.
Hi Wifey007 so sorry to hear about the post treatment challenges around your husband.......you would think that life could move on but often its not the case.
I see that you have posted in the Prostate cancer group before and it may be worth posting this in the group as there lots of folks stick around and help out post treatments.
For you, talking to people face to face can help a lot so check to see if you have any Local Macmillan Support in your area or a Maggie’s Centre as these folks are amazing....... or phone our very helpful and supportive Macmillan Support Line Services on 0808 808 00 00
Hi My partner had surgery in June and we are in the same boat. There is not much support for the partners and it greatly effects both peoples lives. We had a great relationship before this but I suppose we had never faced any serious issues together so never knew how we would deal with them so differently. I feel totally disconnected from him in every way and we have “communication” but he is depressed and feels like he’s not a man anymore. I feel lonely insecure scared and I need to feel close. So it’s lonely. We tried the same as you and nothing works. The more we try the worse we feel. It’s not just about sex it’s about being close and having intimacy. I think the after effects need to be supported more for all involved. It would be great to hear from someone who has actually got through all this. As partners I think we need to talk more openly about the effects of this on us. I also feel mentally drained.
The response this morning from Stepatatime brought you post back to the top of the list and I was wondering how you are getting on.
Lack of libido and being unable to have sex is a subject that most men don't want to talk about but as you rightly say it doesnt just affect the men, the partners become victims as well in the equation.
There are other alternatives to tablets and the pump and your GP should be able to discuss other means of husbands achieving an erection such as injections or a penal transplant.
I was wondering if you both have thought about looking at
prostrate cancer UK - sex and relationships
For advice from fellow suffers and the specialist nurses who can answer all the questions that you need to and should ask about erectile dysfunction and treatments available they will be able to help you both with the female and mental aspects of this.
Looking through the Prostrate cancer UK website I see that they have a network of local support groups if you enter in your post code it will being up a list of groups and you can narrow or enlarge the search area by completing the distance box.
I hope that this will help both Wifey007, Stepatatime and others find information on help available and also by asking questions and joining in discussions in our Prostate cancer forum group will be of assistance.
Please do feel free to contact me. We recently saw a phsycosexual counsellor (on Christmas eve) at the hospital (I called for support and that's what they had). Bloke didn't seem too keen to srr me but actually had a few good points. Also told me what I think I needed to hear. That the counselling was to help hubby get over the loss of the erection (noone ever told us this could be a long time/forever thing...he had non nerve sparring). He mentioned that libido is like an on off switch for me and revolves around the erection and without it the men often get stuck in a vicious circle...I highly recommend going to see one. Even if it only helps a little
*Men. Libido is linked to the erection and is like an on and off switch. Hubby has ordered the new ring which is better (for the pump) but never sure whether to laugh or cry. Its like a turtle neck sweater. Hubby is willing to talk dayatatime if you guys need anything. It truly helps speaking to people who understand. This is also a grieving process. I made us come together to show how much I felt we were on the same team. he offered me the option to leave and it broke my heart. He went from saying nothing to offering me to leave but he now knows that is not what I want. You both sound like you need more help and I urge you to find some in whatever form that suits you both. I never dreamed we would be going to a counsellor but hubby us already opening up. This level of ED may be temporary as well so worth mentioning his depression to the nurses as they are more likely to help him. Do you have a Maggie's centre near you? They are good I hear but unfortunately my nearest is too far for me to get to.
Hi thanks for all your responses and advice. We haven’t seen or spoken to anyone and it’s not something I want to talk to my friends and family about. It’s just so painful seeing the man you love in distress and not knowing how to help. I suppose I didn’t anticipate how weak I would feel. I am normally strong but this has floored me. I feel so helpless and alone as I can’t talk to my partner as I don't want to say anything that may make him feel worse. After the holidays I will call our support nurse at the hospital to see if I can get us some help but it is all geared to help the men which I know they need but it does effect us both. It’s hard emotionally, I know this isn’t about me but I just need a hug from him and he doesn’t want any physical contact with me all. I remind him of what he has lost not what we have. I am glad you found it helpful to talk and I found your post related to me as it was great to hear from a partner and know I am not alone in how I feel. Please stay in touch with your journey.
Hi there, yes definitely in the same boat I think. Hubby and I are a strong couple and have been floored by this. I found contacting the nurses helped at least with what was going on with hubby...its my subtle way of saying, 'hey need help over here'. I didn't tell him either until after I had called. They will have a specialist ED nurse as well. Feel free to use our conversations as prompts..hubby started saying he wished he'd never had the op but when I said others were in the same boat and it took time (can take a year or two) he seemed interested in what others had to say and joined a few groups. I too struggle and def don't discuss with family and friends...partly because its our business but also because I know this could be temporary and we hopefully will one day find a solution and I def don't want people imagining my lack of sex life. I'm def in need of support from hospital and all cancer support people. I think there should be targeted help for those like us. We feel cheated and also confused as between the hispirdl, counsellor and cancer charities, the info varies. All I can hope is that I can be a support to you both. Please do contact the nurses, even if to give updates on how treatments are going...for example, the pump didn't work but we were offered a different size ring from the ones he had in the pack. It is better and finally feel like he may get somewhere but he hasn't tried with me yet. Its not great mind, looks like its wearing a roll neck sweater...sometimes I just need someone to understand. I'm sorry your going through this. I'll def keep in touch.
Hi yes I think we are in the same situation and It’s nice to talk about it with someone who understands. The pumps are the worse. My Partner struggles as he says it hurts and we have tried different rings and attachments and even though it gets hard he can’t stay erect so he gets more and more depressed even though I keep telling him to think of it as just generally exercise!! Keeping active and healthy is a must. I know it’s very hard on the men but I find it difficult I don’t know about you? I feel like maybe I’m not sexy enough. I know I can hear every one saying it’s nothing to do with you and how bad I am to feel like that but I can’t help it. We had a very full active sex life then one day it just stopped. I know sex doesn’t define us and we are close enough and strong enough to get through this but none the less the feeling are still there and real. I have a sense of loss and helplessness and I don’t want to talk constantly to my partner about how I feel as he has enough to deal with and I am up beat strong and confident when we are together I know I have to give him strength and he is worried he will loose me which is stupid as well but that’s what fear does it plays on your weaknesses.
We are trying to take a mental break from everything right now but in Jan I will see what other help we can get. The pump doesn’t work viagra doesn’t work so will let you know what other options are given to us. I hope you guys are ok and keep working together. If you need to talk please do. The more support you can get the better you feel and it’s a very difficult thing to talk to someone about. Here to talk any time
Ahh we are so in the same boat! Hubby has cialis but no luck at all. We asked nurse and she now says he's been on it long enough now but its important for blood flow so he still takes it. The pump didn't work either for us. The ring hurt hubby and hr didn't get on with it at all. We called nurse as the Y ring has a different size either side of it which you need to order so we ordered the x ring. It holds which is good but hubby has no libido to try. He doesn't think he is firm enough either. I agree with the sense of loss. One night I had a sex life, And a hubby with Cancer, after op, I became an even greater caregiver. Lost my sex life and was placed back into 'normality' alone. I am trying to build up a relationship with the nurses which helps. Our health board says the pump has a 90 percent success rate but until he has been on it a year or more it's difficult to tell how its going. They should tell us that in the beginning..we even had to ask to try something like the pump. Surgeon asked us two weeks after op if we had, had sex. I wish they would just say what they need to and not skirt around the subject. Even a little conversation like 'your having a life saving op but we won't know how it will affect you for quite some time'. They do it for incontinence but not for ED. In hoping any other partners reading this feel they can reach out. I'm so happy in my relationship and the lack of information causes Hubby's mind to race I'm sure. I'm very happy with him despite the ED. I do however struggle
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