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Really interesting forum where wives of penectomy patients are discussing

Posted: Mon Sep 03, 2012 11:13 pm
by SplitDik (imported)
I found this pretty interesting and fairly recent. Basically a guy who is about to get a full penectomy (for cancer) has some questions and various people respond, including a wife of a guy who also had full penectomy, including posting a pic of her husband's penectomized crotch 8 weeks post-op. The wife of the first guy also joins the conversation, including expressing surprise when on the day of the operation they do a full radical penectomy leaving no stump at all. The guy starts describing depression and problems dealing with it. Then his wife leaves him due to his inability to satisfy her in bed. Pretty interesting:

http://www.mdjunction.com/forums/penile ... -penectomy

Darrell123

Posts: 19

New Member

I've recently been diagnosed with penile cancer. I'm scheduled to undergo a total penectomy on Monday October October 17th. It's hard for me to believe that my wife or anyone will like how I will look there post op. I was kinda surprised reading your post.

Does anyone else have thoughts of how life will be post op? Any information or shared experiences will help. I'm surprised how little information there is on this. It may be a rare cancer, but it stops being rare when you have it.

Feeling Frustrated.... And scared,

D.

10/13/2011 06:09 PM Top

nsblue

Posts: 52

Member

Hi Darrell123,

I can only imagine how frustrated and scared you are.

Saying that your life will never be the same is basically what it all boils down to. Not only physically but as well as emotionally for both you and your partner. Keeping the lines of communication open between the two of you I feel is very important, there will be some rough times but with support and someone by your side, you will both come through this stronger.

There will be many steps after the penectomy in which you will go through, I imagine it will feel much like a roller coaster ride. Keep focused on getting through it step by step... doing everything you can to keep healthy and healed and you will come through this.

Dealing with your new "looks" will take time. How you function is another. The change is alot from what you once knew. Acceptance and moving forward can be difficult but you can adapt and live a new normal life. Learning to urinate sitting down.... orgasms and ejaculating will be another. Many changes to deal with, not to mention the progressive staging and waiting on pathology and perhaps subsequent surgery after pending pathology.

Stay strong Darrell, beat this dreaded disease, holler if you have any questions... It is a cancer not many talk of but we who have been touched by it know that the silence doesn't help.

Courage does not mean that we do not know fear;

Rather that we carry on in spite of being afraid.

Courage does not always roar, or never shed a tear;

It lets us face life without allowing hope to fade.

Previous discussions I participated in:

penectomy midshaft

my dad is scehduled for a penectomy

INGUINAL LYMPHADENECTOMY

10/16/2011 07:57 PM Top

mounteast

Posts: 3

New Member

Darrell123, I hope all goes well with your surgery tomorrow. I wish you a speedy recovery.

10/16/2011 11:34 PM Top

Darrell123

Posts: 19

New Member

Thank you both for reaching out to me and encouraging me. I'm having a hard time sleeping tonight. I look down there and know that in approximately 8 hours my penis will be cut off..... I know the doctors use the word amputated, but what it boils down to is that it will be cut off. From what I understand a total penectomy will mean they will take it all right? I mean, after the surgery, after I heal will there be a stump left there? I've seen picture of some men who have a stump, but they say they had a partial penectomy. I guess I just want to know, will there be any part of my penis left after this?

Another question I have is, is there any point to having a new penis made? To me that seems like it would be foreign. Like it wouldn't belong. For those of you who have had this, did you decide to just live without a penis? And to any women who are part of this forum, or who have had a husband or boyfriend who had this happen to them. Would you have preferred them to have it replaced somehow? Or do you like it better with just no penis there anymore? My wife is very curious about how other wives or girlfriends dealt with it. Whether they liked it better without, or wanted their husbands to get a prosthetic, if there even is such a thing???

10/17/2011 02:10 AM Top

sirocco97

Posts: 26

New Member

mate .looking at the date ,and the fact its the 17th in australia today .means if you are probably going to surgery tomorrow in the northen hemisphere.i wish you all the best.i had what they called a partial penectomy,glansectomy ,and a glans reconstruction.the upshot is i have about 2 inches erect,but mate ,and i mean this ,its better than being dead,and thats where you were heading ,penile cancer doesnt play games.if you survive .its all good,and im sure your wife loves you as mine does ,and will stand by you .,if you need to talk about anything pm me

10/17/2011 02:32 AM Top

nsblue

Posts: 52

Member

My husband at the time the decision was made for a total penectomy there was no time basically to really think. A span of 24 hours occurred from diagnosis to penectomy. More due to his severity than anything. His story is at http://penile-cancer.ca

Like any major change there is an assimulation time, grieving etc to work through. We often wonder how in the world do I/we get through this? We found we had to look for the good where ever we could find it...and focus on that to get us through. positive vibes are what will keep your mind occupied and centered.

Here is a picture of my husband's radial penectomy (total penectomy) 8 days post op if it helps.....

About a month and a half later, my husband noticed when upon waking he had a hardness come and go similar to an erection. We assume that there must have been some residual left of the erectile tissue.

He then wanted me to buy a strap on at an adult store in town of which we did. I feel he wanted it more for me, but it very well may have been a bit for him too. I must say though it soon was pushed aside and we made our own way to make love where we BOTH orgasmed. Understand it takes time to assimulate... I loved my husband, with or without a penis that remained and we found new ways to show it and became stronger for it.

Good health is the MOST important thing ever. Cancer can be a fight. Do what you can to fight it, keeping positive to get through it.

Courage does not mean that we do not know fear;

Rather that we carry on in spite of being afraid.

Courage does not always roar, or never shed a tear;

It lets us face life without allowing hope to fade.

10/17/2011 10:15 AM Top

Darrell123

Posts: 19

New Member

hello.... my name is Lisa. I'm Darell's wife. I am so thankful this sight exists to help Darrell and other men going through this difficult kind of cancer. I honestly didn't even know men could get cancer in this part of their body. I just want Darrell to be ok, cancer free! I told him nothing else matters. nsblue, you are so brave. Thank you for being wiling to show us a picture of your husband and how he looks there now. It seemed to help Darrell prepare for what he will probably look like once he is healed.

Sometimes he makes jokes about it. Saying I can choose the kind of strap on I want now. I try to laugh a long with him, because the humor seems to do him good. But how can I get him to understand that a penis just doesn't mean much to a girl. At least it doesn't to me. We've already had all he children we intend to have. And honestly, I prefer the other ways my husband and I can be intimate as opposed to simple penetrative sex. The counselor told us that some couples actually get closer once the penis is gone. Is this something you have found to be true?

My first priority is to get Darrell well, that's all I'm concerned with. After he's healed, I'm actually looking forward to exploring love and sexuality in a new way. Is it wrong for me to have feelings of excitement, to know that his penis is gone, and that sex will no longer be such a quick act? I'd love to hear any advice from all of you here. Ladies, how did you deal with it? Once you got over him beating this dreadful disease, did you find your intimate life to be better now that his penis was gone? And gentlemen, how did you feel once you accepted it was gone? Did you finally accept it? Were you able to get past that and look at your relationship with your wife or gf in a new light?

(p.s. I apologize if I'm writing comments that should be in a more private area. Darrell showed me this site and talked about how much it helped him. He told me I should ask questions of my own and to feel free to ask what's on my mind. So here I am..... I haven't created a profile for myself yet. With his surgery being today, I just wanted to reach out, with anyone who would talk to me. Thanks for listening to me blab on. I guess that shows how much of a wreck I am. I'm in uncharted waters. And I just want to be the best wife to my husband in his time of need that I can be. Please help.

Sincerely,

Lisa

10/17/2011 12:19 PM Top

sneaky01

Posts: 12

New Member

hello lisa, understand after the penis has been removed it does take some time to adjust, the area heals well and quickly. theres a cathiter that will be in for a week or more it takes a while it get used to peeing through new hole mine is between my legs now. if the whole of the penis is removed theres no stump iam smooth , i found on the internet some very well made prosthitics . iam in new zealand found it hard get a prosthitic in end got one from usa looks real . please feel free any time ask questions . rowan . rssimpson@slingshot.co.nz

10/17/2011 05:27 PM Top

mounteast

Posts: 3

New Member

Lisa, how did your husband's surgery go? How is he doing?

Darrell123

Posts: 19

New Member

Darrell's surgery was a success. The doctor feels they got all of it. His penis has been completely removed. I guess the penis extends into the body by quite a bit, which I didn't know. But the doctor said they felt it was best to take the entire organ. I asked for clarification about the stump, and the doctor said no, there will be no stump, no penis at all. Which personally, I am glad for. That's where the cancer was. I'd rather have Darrell then that thing. I don't know if I'm looking at it properly, but I started to look at his penis as the enemy, because that was what was killing him. So, as far as I'm concerned, good riddance. I just want my husband back.

Darrell was groggy and is sleeping fairly well. He wanted to know if they were able to save any part of his penis, and I told him the truth, that it was gone and that I didn't love him any less. He still seems upset about it though. The doctor said that was understandable because this has been his way of urination as well as sexual expression his whole life. So, I guess it will take some time for him to come to terms with it. He still feels that when the bandages come off that some of it will be there. He says he can feel it. I just say, ok... I mean, maybe there is something still there. He says he can feel that its there.

The doctors say, they expect him to make a full recovery. Of course, there is always a possibility that the cancer could come back and further surgery would have to be done. But, I don't even want to think about that right now. I'm just glad we're past this part. And I hope with the help on this sight we'll move forward. Thank you for asking about him!

Reply

10/20/2011 02:05 AM Top

sirocco97

Posts: 26

New Member

thats fantastic Lisa.good to hear .the support from your wife is important,however i also found the support of the handful of guys i let know to be very helpful...please .do not tell anyone without Darrells consent,this has been a huge problem with my wife and i .she would tell people she thought should know ,and id freak.i didnt want anyone to know that didnt need too.i have relaxed since then.and found that this has been just as hard for her as me .but it took time for me to accept that.

10/20/2011 02:27 PM Top

Darrell123

Posts: 19

New Member

Scirocco,

You make a good point. I guess we women are a lot more open about things of this nature then men are. Darrell's been very adamant about no one knowing. He gets embarrassed when the nurses change his bandage, but all the nurses have been great. This just all happened so fast. And like other stories I've read on here, Darrell wasn't fond of doctors or going to the doctor. I doubt this experience will change his mind much. So far all looks well. They told him that the "feelings" he's having of still having a penis are called phantom pains. They said they usually go away in time, but some people can always feel the lost appendage. May I ask, do you still feel your penis? Or can you sense that it's gone now?

I will probably get my own account on here and I'm hoping I can talk to some of the wives or girlfriends if they're willing. Darrell said he thinks he'll be up to posting on here soon and thanks all of you for supporting him and me. I think we're both going to need some guidance on intimacy after penectomy. Is there any information on that, that I'm overlooking? Thanks.

Lisa

10/20/2011 06:59 PM Top

sirocco97

Posts: 26

New Member

lisa,i actually have a two inch stump.with a skin grafted "head",but yes sometimes it still feels all there.however i was only operated on on august 15 so it hasnt been that long.those feelings may go away in time

10/25/2011 03:43 PM Top

Darrell123

Posts: 19

New Member

Hello everyone,

I'm sorry for not responding sooner. I just wanted to thank you guys who talked with Lisa, my wife. She needed some support and I can tell you all really helped her. You've helped me too. I am finally home and resting. It's hard to believe that just a week ago I had a penis and now it's gone. But then again, I guess cancer, whatever cancer it is can do that to a person. It's just that this is such a personal and private part to lose. It still feels as if it's there to me, and I often have to look there just to confirm that this nightmare is real. As Lisa said during my recovery at the hospital, I was so embarrassed whenever a nurse came in to change the bandages. But, several of them told me it looked very good. I'm not sure if they were just humoring me, but maybe it's true that a lot of women don't think so highly of this part that we guys obsess over. They did do a scrotal elevation for me and they've told me that will be a very good thing as I heal and live life without a penis now. Of course for now, I still have the cath. but they say that should come out soon. Then I guess it will be sitting to pee for me from now on. Mel talked about big big changes and I can tell indeed they are. Thank you all for being helpful. I can still use any advice anyone has to give. Especially on intimacy after penectomy. There seems to be very little to no information on this, yet, anxiety for me and my wife runs high on this thought. I hope all of you who are dealing with some form of this blasted disease are doing well.

Darrell

12/02/2011 01:28 PM Top

j49

Posts: 21

New Member

Hi Darrell

I had a similar surgery begin 2010. I still struggle with it. Complete penectomy has a very big impact on how you feel. It is hard but just think what would happen if you would not have had the surgery. You still are the same person.

Take care

John

12/26/2011 01:05 AM Top

Darrell123

Posts: 19

New Member

Hello everyone,

It's been some time since I posted on here. I'm sorry for that because many of you have sent a hug or just a message to ask me how I'm doing. It's really been amazing the support I've received. THANK YOU! I'm doing ok. To be honest, I've been pretty quiet. This is one of those rare times when I'm up for talking a bit. Of course it's very late and Lisa is asleep. I know I'm not being fair to her..... She's been of great support to me, but she has told me how much she misses the intimacy. I just feel so strange without my penis now.

So far the cancer side of this whole ordeal seems to be good. All my tests are showing up as no cancer. I should just be grateful and live a full life with my wife. But instead, I often fight depression. When Lisa wants to be close, I just feel like all I can do is let her down.

I really am trying, albeit not hard enough. You'd think I'd be used to things like still being able to feel it there, and still knowing it's not. But knowing it, doesn't stop me from stepping into the bathroom to check, and then just be in disbelief that it's gone. I shut and lock the bathroom door now anytime I'm taking a shower or going to the bathroom. We only have one bathroom, and sometimes Lisa needs to get in there. It just seems like I'm shutting her out of all of this. But, at the same time, I don't know how to share it.

I'm open to any suggestions on how I can open up...... In fact, I've even had a few of you ask me for help. I guess I haven't felt much like the kind of person that can help, when I don't know what I'm doing myself. But maybe just talking about it. Sharing what I'm struggling with will help someone else. And perhaps, by doing that, maybe I can get my life back on track.

I'll close for now, but I hope this at least lets you all know that I'm here. Lisa keeps telling me that's the blessing I must focus on. I know she's right...... Merry Christmas to all of you. And thanks again for the gift of simply caring.

Darrell

12/26/2011 03:30 AM Top

nsblue

Posts: 52

Member

Hi Darrell,

I first want to say how very happy I am to hear you say all your tests are showing up..no cancer... That is SO wonderful!!! You are very, very fortunate. I know you may not feel like it.... having lost a part of yourself in the process, but believe me it far outways having it rage through your body at the alarming rate as this type of aggressive cancer does.

I may not be able to fully understand the things you are going though and I am sure the grief/loss you must feel must be overwhelming at times. Just know that grief/loss has it's moments and all you are feeling is very normal, especially with all you have come through.

It does take time, and seeing you reach out, and share is good to see... for this all is a part of the healing. Looking outside of ourselves, helping others, reaching out to others, or looking for something good to focus on gets us through those hard times.

There are things in this life that we cannot change... and dwelling on them keeps us stagnant and prevents us from living. I am sure you struggle with not knowing how to deal with all the emotions u are having. Being close to your partner, not really sure how you will be able to express your love in the manner you done before is a big change.... realize your wife knows this... and she loves you... and probably is open to any methods that you both will be able to learn together to express that love between you.... that is making love... a new level of it.

Grieving for the loss of your penis is very normal. Realize though in time focusing on what you dont have, you will lose focus on what you do have. I found with my husband and me, we grew to that different level ... in discovering love can be expressed in many ways and in so doing, making love was new and fresh and still we were able to reach orgasm.

When you leave your mind open to possibilities, you can overcome those things that hold us back.

There is always hope Darrell.... always.... remember that xox

Post edited by: nsblue, at: 12/26/2011 03:33 AM

Courage does not mean that we do not know fear;

Rather that we carry on in spite of being afraid.

Courage does not always roar, or never shed a tear;

It lets us face life without allowing hope to fade.

12/28/2011 08:11 AM Top

Darrell123

Posts: 19

New Member

Mel,

Thank you so much for reaching out to me and for the support you offer. Your help and candidness about this cancer and its impact has been very valuable to me and to my wife from before the surgery to today. Lisa and I did have a good talk yesterday and I realized some things that I think have been bothering me without me even really knowing. The first thing, is a fear of the cancer coming back. It is a very aggressive cancer, and each time I go in for a new test, I'm just so afraid they will find that it has come back and has spread and that I'll be facing a much bigger issue than just the loss of a body part. The penectomy is so apparent to me and as you said has caused BIG changes to me in so many facets of life. But underneath all that is the main issue, which is hoping to be a cancer Survivor just like anyone else who has had to try to beat cancer regardless of where it effects a person.

The second thing that I think has really been bothering me is the emphasis society puts on a man and the overtly sexual cultural we live in, particularly in America. Maybe I'm thinking too much about this, but there seems to be constant ads on about viagra, performance, and always trying to do better to please your partner. Well, all of that has taken on new meaning and frustration now. Viagra wasn't something I ever used before, but now when I hear commercials on it, it just seems to make the fact that I no longer have a penis that much more painful. Also in my search of those who have had to deal with a penectomy, I've come across various articles of men who lost it due to and attack by an angry wife, etc. When I run across these articles I'll read the comments section and see where, at times women will say, "Well, he's no longer a man anymore." or "Well, that'll teach him, now he can never be with a woman again.

Lisa has told me it's time to stop reading those comment sections because that's not her and just because some may feel that way, doesn't mean all women feel that way. I do know she's right, but I also think those comments have contributed to my fear of not being....... Well..... Male.....Manly.... I'm not sure what to call it. But just the idea that some people out there wouldn't consider someone without a penis a man, bothers me. Maybe I'm just over thinking all of this. But this is the truth.

So these are the two issues I guess I (we) are trying to deal with. I think your husband was a very brave man. And I gain inspiration from how he handled these issues. I'm so thankful you have shared his story.

01/06/2012 04:06 PM Top

Darrell123

Posts: 19

New Member

There doesn't seem to be many people on here lately. I really don't know who to turn to for help. I feel alone. Isolated. I feel I need to talk about these issues, but everyone seems to think it's either taboo, or too personal. It seems everyone's willing to talk about breast cancer. But if you even mention cancer of the penis, people either think you're lying, weird, or secretly looking to talk dirty. I'm really frustrated. I'm grateful for this site, but to be honest, we need a lot more people talking about this.

I'm sick of people telling me how rare my cancer was. Ya know, statistics don't matter when you're the statistic. Cancer of the penis is not rare, not to me. In fact to me, this cancer is 100% real!

Ok, there's my rant for today. Sorry if I offended anyone.

Darrell

timpeters

Posts: 4

New Member

@Derrell: I know how you feel. I didnt have penis cancer but an infection that led to amputation of most of the penis. Its even more rare than cancer and the result is the same...

Contact me if you want to talk...

Reply

01/08/2012 12:41 AM Top

sirocco97

Posts: 26

New Member

your correct in what you say ,its hard to talk about ,because its not the kind of thing people know about .i havent told to many .but most are like "what i didnt know you could get cancer there".and also yes its rare ,but not when you have it ,the feeling of isolation is intimidating .we have breast cancer week, prostate cancer week ,etc .you feel forgot about, even on here ,because i still have a 2 inch stump with a skin graft for a head ,i feel like an out cast because i still have "something".but ill tell you ,its no fun when the stump wont come far enough out ,and you piss down the front of your pants.or you try to play it safe and sit down .but the piss manages to find its way between the seat, and the bowl .and when you pull your pants up, they are saturated . Darrell you havent offended anyone ,atleast not me .its FUCKING tough mate .and when i finally meet ST PETER,i will be saying .GET OUT OF MY FUCKING WAY,IVE ALREADY PAID FOR MY SINS

03/05/2012 10:32 PM Top

Darrell123

Posts: 19

New Member

I just wanted to let everyone know. That my wife Lisa has left me. This cancer proved to be just too much for our marriage to bear. Still, I am thankful that I'm alive and that so far all the cancer tests have come back normal. Lisa and I agreed this was for the best. I do appreciate all of you who have helped me through this. I'm still looking at a long road ahead, but I plan to keep trying to help anyone who may need my help. If anyone needs to talk, I'm here. Thanks.

Darrell

03/06/2012 08:05 AM Top

pogue

Posts: 28

New Member

that is really bad news mate that must be hard to take.if it was me id be gutted,thanfully i have a wife with a low sex drive so it would not bother her if she never had sex again,we are both 59 though!!

03/06/2012 08:35 AM Top

Darrell123

Posts: 19

New Member

Yeah, Lisa and I had a very active sex life and this was devastating to us. We tried some different things to get that passion back in the bedroom. I'm sure some of it was my feelings of inadequacy. But there's no doubt the absence of a penis was a contributing factor both to my mental state, and her disappointment. She felt she just wasn't being fulfilled. It may sound like I'm making her sound shallow, but she wasn't. II think it's natural for a woman to want her husband to have a penis and to be able to have "normal" sex. Without a penis, that is something I just wasn't able to provide anymore and it was just more than she could deal with. In many ways I do feel gutted and I'm very low right now. But I'm trying to remain positive. I still can't believe my penis is gone. This was something I thought I would get used to by now. But, I still keep thinking it's there, only to be reminded the awful truth, that my penis has been removed permenately. Perhaps some time alone in reflection and acceptance is what I need most.

Thanks for your response.

Darrell

03/06/2012 10:33 AM Top

pogue

Posts: 28

New Member

i cannot believe a penis is more important to her than you,surely things you can do together is better than nothing?i was very pleased with my penis now with erection i may have 4'' which is a dissaster to me but it still could do a job i guess ,this is something i will learn but losing it all must be devasting

03/08/2012 09:28 PM Top

Darrell123

Posts: 19

New Member

It was a difficult break up, and I don't think it was all about my lack of a penis. But that was one more thing added on to many others. Once she knew that I was physically okay (that meaning no cancer cropping back up) she felt she needed to move on. As some of the women on here have reminded all of us, this is something that effects both. Yes, the man has lost a very personal part of himself, but the woman also loses the intimacy she is used to. I guess it's a learning thing for both parties. It just seems that we weren't able to pass the test. There's no doubt that mentally this has hurt me, but then again, I'm not sure any divorce is a happy moment. I'm feeling quite down and I have to admit, I don't feel much of a man anymore. I'm not trying to sound like poor me. I'm just saying what I feel. I know I need to suck it up and get with the program, but this is difficult to go through alone. I appreciate your comments. Thanks to all of you who have been so kind to me through this nightmare.

Post edited by: Darrell123, at: 03/08/2012 09:29 PM

03/09/2012 09:25 AM Top

pogue

Posts: 28

New Member

good luck to you, by god we all need it?

03/09/2012 02:46 PM Top

j49

Posts: 21

New Member

Darrell, this must be very hard on you having to cope with this separation at a moment when you must feel very vulnerable. I am so sorry it did not work out. Having to cope with this and also the surgery and the changes to your body is huge and devastating. If you want to talk or just do smalltalk please give a sign.

John

03/10/2012 04:31 AM Top

nsblue

Posts: 52

Member

wow darrell, i am totally taken a back of your news. probably because i am a "lifer" in any relationship to the core, and seeing your wife in here before felt she was with you all the way. My heart goes out to you. It is hard enough alone dealing with the cancer, as well as the physical and emotional changes within yourself.... but this? wow. Surely there must have been some underlying reason that had just brought this to the surface for her... for IMO true love just doesnt work that way. I guess when the chips are down one truly sees things as they are.... so sorry for your heartache. I know it must be very hard not to take it personal... i understand that perhaps the circumstances may have triggered things with her... but she definitely had more issues and relationship depth problems than just the cancer/penectomy alone. The penis or the act of sex alone does not make a marriage..... love is multifaceted...n apparently it was missing with her.

I realize this cancer has many many blows...life has many... but hold on darrell. Life can hit us with many blows one on top of the other... sometimes we wonder how in hell we will get through it.... but we can. The last 2 1/2 years has been a struggle for myself... many dark hills n valleys to climb through... as i am sure you know part of my story with my husband's. but even through it all i struggled with my own health issues...though more concentrated on the hubby's. i was 600 pounds + when my husband was diagnosed.... in watching him struggle for his health i knew i needed to work on mine. twas hard after he was gone but i fought those demons alone...loss of a love, self image issues..unworthiness..loneliness... it was really hard.... but i now have 385 pounds off.... yeah im still lonely at times...but i have my health... n living does go on even with the scars n heartache from the past. happiness it different now but i am happy. life is life n it does go on. it will for you too...n who knows what is in store for you... never lose hope... there are reasons for everything... we may not see them but there is.

Find something to focus on Darrell to help get you through this....you can do it... you havent beaten this cancer to give up now...

((((huggs)))))

mel

Courage does not mean that we do not know fear;

Rather that we carry on in spite of being afraid.

Courage does not always roar, or never shed a tear;

It lets us face life without allowing hope to fade.

pogue

Posts: 28

New Member

great post mel!! cancer is bad but penile cancer is a man thing to share with his dedicated wife and family and supporters of this forum.in mother nature i trust it will not raise its evil nasty head again

Reply

04/06/2012 12:18 PM Top

Darrell123

Posts: 19

New Member

Mel,

Thank you so much! I'm sorry I didn't write you much sooner. You're looking great by the way, and congrats on losing the weight you have. I've struggled with weight loss as well, and I now it's not an easy thing to do. But you did it and did it while going through grief and loss. That's truly amazing as well as very inspirational to someone like me.

I took some time, away from the computer and away from everything really. I live in a beautiful part of the world up in the mountains and feel very blessed to be here. After the divorce and still trying to cope with the loss of my penis, I just had to get away from it all. I found the hikes and my time spent in nature to be very therapeutic.

We live in such a fast paced world and so much is geared toward sex and pleasure. I found that watching television and being on the internet were just hurting my soul. It seemed every time I turned around I was seeing a commercial for Enzyte or Viagra, if it wasn't that it was keeping yourself healthy so you could have sex. Then there were the times I myself would go online to talk with women asking them how they would view a man without a penis. Most were interested, even fascinated at what happened to me, but most of them also said they would not want any kind of serious relationship with me.

All of this, really began to depress me. I'm curious if others of you have gone through this stage? Finally, for me, I just had to turn it all off. No more polls, no more commercials, no more therapy sessions, no more ads about sex, no more listening to internet chatter of the man who had his cut off by his wife and put into the garbage disposal.

I just had to turn it all of, and tune it all out. And since I have done that, I began to truly heal. Both accepting what the surgery took from me, but also accepting my life that it's allowed me to continue living! I'm grieving the loss of my marriage and still coming to terms with that. But I believe it will come with time. For me anyway, this world was so fast paced that I began to give up. I felt worthless as a man, and like no woman would ever want me again. But, after I stepped out of that fast paced vicious cycle, I began to see what's really important in life: Living, Loving, reconnecting with people and loving them for who they are.

Ok, this was longer than I expected it to be. But, if this somehow helps anyone out there, than it was worth each word. I've accepted that my penis is gone. But it doesn't make me less of a man, nor does it make me incapable of giving love to someone who is willing to look past this. I hope I will find love again someday. For now, I'm working on the new me. I just wanted to say thanks to all of you, who have helped me take those small steps to where I am. I still have a long way to go, but I am filled with courage and hope to take another step every day. I appreciate all of you.

Darrell

04/06/2012 10:40 PM Top

pogue

Posts: 28

New Member

you are one brave man much respect to you superman!!!

04/12/2012 08:03 AM Top

Darrell123

Posts: 19

New Member

Pogue,

Thank you so much for your encouraging words. I don't know that I'm a superman, but it's sure nice to know someone is pulling for me and I've always been grateful for the support I've found here. I'm still doing ok. Sometimes the grief of the divorce really gets me down. And sometimes it's my missing penis that really gets to me. I try to just stay busy and not thing about either. But that's not always an easy thing to do. Your continued thoughts and support is certainly appreciated. Thank you!

Darrell

04/12/2012 10:08 AM Top

pogue

Posts: 28

New Member

im grieving losing 3'' but losing it all must be devastating? cannot imagine how id feel as losing 3 inches myself is bad enough.looking at mine now i dont think i will bother trying to have sex again as its been 3 yrs since we did because of this cancer.my wife would not bother tbh if she didnt have sex again so im under no pressure there.for the first time im seeing a cancer consultant next week as i havent seen one yet because i havent a clue about malignant melanoma especially on the penis,im hoping then i will understand the long term prognosis.i thought after having this op i would be happy to know it had all gone but tbh im very depressed.

more bad news for me,ive seen the skin cancer people and they said not enough margin was taken for a melanoma,they said that at least 3cm should be taken with a thickness of beslow 3.44mm a further 1.5 cms needs removing now if not the cancer will return and if it does no treatment could be given to stop it spreading resulting in death.

Re: Really interesting forum where wives of penectomy patients are discussing

Posted: Mon Sep 24, 2012 3:47 am
by noobie20 (imported)
i think you went a little overboard on the length of your post. if you place a link why place most of what the link says right below it?

Re: Really interesting forum where wives of penectomy patients are discussing

Posted: Mon Sep 24, 2012 6:51 am
by Paolo
Links go bad, in many cases, and we end up with a link to nowhere.

Posting the content (such as it is) is the forum rule, unless it's a video or something that you cannot copy and paste.

Re: Really interesting forum where wives of penectomy patients are discussing

Posted: Mon Sep 24, 2012 4:46 pm
by SplitDik (imported)
noobie20 (imported) wrote: Mon Sep 24, 2012 3:47 am i think you went a little overboard on the length of your post. if you place a link why place most of what the link says right below it?

Actually, the rule is you're NOT supposed to just post links. You're supposed to post full text, because the links go bad and can disappear. The archive has been here over a decade, and you can still get information here that has disappeared long ago.

EDIT: Yeah, what Paolo said ...

Re: Really interesting forum where wives of penectomy patients are discussing

Posted: Mon Sep 24, 2012 10:10 pm
by Woggler58 (imported)
This surgical castration-related reply post is about a married, post-penectomy penile cancer survivor in his early thirties being unable to attain orgasm and suffering from unrelieved, hormone-driven sex drive despite his wife’s best efforts in assistance. He seeks help from this penile cancer support group,
3782900-penectomy-and-orgasm

His situation, being a worst-case version of erectile dysfunction plus phallic and groin tactile insensitivity, has much in common with many prostate cancer patients after their sexual performance-damaging, curative cancer treatment and who still have raging testicular function: How do we sexually please our mate and how do we get our own sexual relief absent orgasm and ejaculation?

The penectomized young husband here proposes ending the sexual drive component of his lovemaking by having a surgical castration and winding up a nullo. His saga, plus suggestions by a particular replier (all copied below) would appear to be of interest to readers of several of EA’s body mod procedure and disease-specific forums. In many of the comments I’m reminded of Dr Wassersug’s own situation and findings. He’s the researcher who EA’s Jesus has been working with re elective castration.

Woggler58

From the above penile cancer website forum: “Deliveryman,” a married 32-year old, posted on May 29, 2012,

I had a radical penectomy last May. I have a perineal urethrostmy [urethra outlet reroute to behind his scrotum] and my lymph nodes were removed in a later surgery. My wife and I have tried various methods and sexual positions. She can orgasm but I cannot. We have watched erotic movies and even tried anal penetration with me so hopefully my prostate would be stimulated enough for me to have an orgasm. Nothing. Even rubbing the stoma [new urethral outlet] has had no effect. The result is I stay extremely aroused and horny and totally frustrated. I have asked my urologist to perform a bilateral orchiectomy, but he is resistant because he says it is not medically necessary. He sent me to counseling instead.

I have subsequently found a urologist who has agreed to perform an orchiectomy but now my insurance company will not play ball (no pun intended) for the same reason - not medically necessary. I feel that if I have a bilateral orchiectomy that with castrate levels of testosterone I will lose my desire and be able to live a peaceful life, still being able to satisfy my wife as I do now.

Has anybody else had this issue, and how did you overcome or cope with it. I would prefer a way to have orgasms, but if I can't, I cannot continue to live like this. Please anyone help.

One reader replied,

I have the same problems, I have also only my testicles without any stump. Sometimes I can ejaculate when I rub my testicles for a long time, but it takes more than 45minutes, after that semen dribbles out of my stoma.

Others replied that vibrators or anal stimulation work for them. Then Deliveryman reported back on July 8,

Thanks to everybody for information on this subject. Insurance has approved my bilateral orchiectomy but my wife has convinced me to hold off until the end of the year. We are scheduled to see a sex therapist so maybe that will help us. My wife is a wonderful woman and support. She says I must do what is best for me, but she wants me to do all I can to achieve orgasms before I take this final step. So I will give it through the end of the year. I really wish there was more information out there on this, but if there is I can't find it. I stumbled onto this site by accident. Doctors are really no help. They understand the clinical aspects, but fall short on the sexuality side. I am sure if I had only a partial penectomy things would be different, but with the radical penectomy there simply is nothing with which to work. Thanks again for the comments. I hope I can get more from those who have had radical penectomies.

A reader named “mdmax” on Aug 5, 2012, offered many tips:

Please do yourself and your wife the favor of waiting. While you may find your situation frustrating now, you may find it much, much worse after orchidectomy. Without your penis, you are still a man. Without your hormones and sex drive, you are not. There is a not-very-discussed side effect to orchidectomy, which is depression, the bleakest, blackest, most horrible kind of depression possible. Right now you may feel upset, lacking, or incomplete or missing - but at least you are feeling something. If the realization sets in that you feel nothing at all (which happens after castration), that can be much more disturbing and dangerous.

I can't tell you what to do, or promise any particular result, but I would ask you to consider the following path. What you are doing now with being open to prostate stimulation is good - but it is very hard to do this stimulation yourself, or even to learn how to do it. It is totally possible for a man to reach orgasm from this stimulation, even without involvement of his penis, but it takes a lot of practice and hard work.

1) Practice yoga. Learn about your "mula bandha". Begin to access this area by squeezing your butt together at first, then once you develop the capacity, engage it and actively learn to flex the muscles surrounding your prostate. Continue to stimulate this area. You may want to try toys such as the "Aneros" or "Rude Boy vibrator". It's really great you are open to this already - most men are scared of this for some reason. But the truth is prostate stimulation feels amazing and can produce even better orgasms than penile stimulation.

2) Don't watch porn. There is nothing wrong with using imagery to get aroused, but porn videos always focus on traditional penis in vagina (or other place) sex. Since that isn't happening any more, looking at sex in that way is not healthy. Find images that do turn you on without being "hardcore". Being powerfully aroused is the first step in the sexual cycle of arousal, plateau, climax, cessation. Although you may be used to it, you should not need physical stimulation to get aroused - a fantasy or erotic image can do this, or ideally, your wife dressed in a certain way or doing a certain thing that excites you very much. Your nipples can be just as powerful of an erogenous zone in this first step of becoming aroused.

3) Give up on orgasm for a while. Stop making it a goal. Try to enjoy your wife's pleasure instead. Get really good at giving her oral sex - if you want to continue to have an active sex life, it's probably going to be your primary sexual expression now. Enjoy it - as much as you can, and as often as possible. You will find that even if you don't orgasm, it can be fun and offer just as much satisfaction to enjoy her pleasure.

4) Learn to control your breath. Breathing in and out controls every biological function in your body, including sex and orgasm. Do not let breathing become subconscious, keep it active and use it to bring you to where you want. Fast, heavy breathing takes you to the external body; slow, deep breathing bring you further inside. You probably want the latter to help connect with your inner sensations and awaken those feelings inside your prostate. Learn to be patient and wait for your reward.

5) Combine all the above. If you can foster the mental discipline to become powerfully aroused, combine the physical practice of clenching your mulabhanda, you will stimulate your prostate internally. Combine this with the excitement involved in the sexual activity of something such as pleasuring your wife, or receiving prostate stimulation, proper breathing to help get you there, and patience to grow those feelings fully, it will be possible to have a very satisfying sexual experience, including orgasm. It may feel very different - I actually think it is better than regular sex.

Using these techniques, I am able to experience orgasm just by pleasuring my wife. It isn't fast, nor can I rush it - it takes about 25 minutes or so, and I really have to be in the mood - but when I do orgasm this way, it feels ten times better than any penis-in-vagina orgasm I have ever had. Even if it were possible to go back to something else, neither of us would ever wish for anything different - this has become the new norm and it is actually better for both of us. I do not orgasm every time we make love, but I can orgasm about once a week this way, and all the waiting makes it all the more worthwhile.

Best of luck to you, and do not give up hope - there is still a wonderful life ahead of you, including sexual pleasure and satisfaction, if you are open to it. I can't promise you an orgasm, but I can promise you happiness and confidence in your sexual relationship if you just keep at it. It took me over two years to learn the above techniques and practices and then integrate them to work with my body in such a way. It is a difficult road, but not impossible, and the rewards to be found at the end are many, many more than expected.

Deliveryman then reported on Sep 14 that he’d obtained his castration including scrotum removal, and was quite satisfied with his sexual technique and several favorable effects of very low T:

All, I am sorry that I have not been on here for a while. After a year and three months of not being able to achieve an orgasm by any means, I finally made my decision and had a bilateral orchiectomy performed. I had my scrotal skin removed as well. I am also obviously not on HRT either. I experienced hot flashes for a couple of weeks but now I am OK. My testosterone level is at 35 so that is good.

Although it is sad that I am only 32 years old and I now have no genitals, I have developed a calmness I did not have. I no longer become aroused and having sex with my wife now is a satisfying experience without the tension and frustration I was having. Evidently I sustained a lot of nerve damage when my penectomy was performed resulting in substantial numbness in my groin area and around my stoma. In fact most of my scrotum was numb as well. This was probably a root cause of me not being able to have an orgasm.

My wife and I now have a great sex life. I can pleasure her by hand and also with a strapon. The strapon is why I had my scrotal skin removed as it interfered with the strapon when I had my testicles and I was afraid that the skin might still interfere after the orchiectomy so that seemed a no brainer to me.

Anyway thank for all the advice. I will continue to read this forum and might post again if anything ever changes for me. Right now with the pent up desire and frustration gone, I am living a much better life. Maybe sometime I will develop an orgasm again, but if I don’t at least I am not sitting around fretting about it anymore.

Re: Really interesting forum where wives of penectomy patients are discussing

Posted: Tue Sep 25, 2012 5:44 pm
by moi621 (imported)
Thanks for the Link.

I do hope the uploads are sincere and not role playing.

Moi

Re: Really interesting forum where wives of penectomy patients are discussing

Posted: Wed Sep 26, 2012 7:20 pm
by SplitDik (imported)
After reading the blog by C&TL2745 here on EA, I got very interested in the fact that her husband ended up with a totally numb penis from banding. I had banded a lot but never had that effect. But I finally achieved it two weeks ago, where I put an elastrator on the base of my penis (when erect) and left it on for an hour. For past two weeks the entire penis has been entirely without feeling (I mean couldn't even tell when I was holding it, could poke it with a needle without feeling it) and only now the feeling is creeping back in. Anyway, it was amazingly interesting as I am extremely horny and I simply couldn't orgasm. The cool thing was I could still get rock hard but could go literally for hours. After three nights of lovemaking where we went a couple hours without cumming it was pretty amazing, but I was getting extremely frustrated. Vibrators, massaging the base, etc. simply wouldn't work. My wife tried everything.

By the way, the reason the total numbing happens is that the dorsal nerve of the penis gets compressed and blocked. Apparently this happens pretty commonly to guys that get excessive with hanging weights from their penis to try to lengthen them. It can take up to two years for the feeling to come back ...

Anyway, I have to say that it really is a frustrating situation and I'd imagine that any guy with a full penectomy that had high sex drive would find it maddening. Although I actually enjoyed not feeling the penis, and also the endurance in bed, it would be tough for most.