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Author Topic: Thank you to supportive partners! I don't have that comfort :-(  (Read 3241 times)

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Fubar Penis

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Thank you to supportive partners! I don't have that comfort :-(
« on: November 21, 2014, 07:03:27 AM »

I just want to take a few minutes and give a thank you to all of the women who support their partners through this horrible disease. I unfortunately do not have that in my life. My wife has pretty much neglected me from almost the very beginning of when we knew I had peyronie's. She hasn't slept in the same bed, had any sexual contact, said any encouraging remarks, or provided me  any comfort or reassurance that we all too often hear is a vital and important part of the healing process with peyronie's. She refuses to see counseling with me. How am I supposed to feel like these deformities and shrinkage doesn't matter when the woman I took vows to be with unconditionally keeps pushing me away? I'm only 4.5 months into this thing too, so hopefully things don't progress and get worse. I have been trying to dress up a little to maybe help with my esteem right now and she used to comment about how nice I look, but not now. She looked up my disease once or twice, but hasn't really done any research on it, or listened to me when I talk about it. She refuses to seek a counselor and will barely even talk to me anymore. We are both in our 40s and the peyronie's happened during a sexual encounter between my wife and I. It is hard to not feel like she is checking out of the relationship. I start to feel like she must be having an affair or planning a divorce. I  love her and my son so much, and it would hurt tremendously if I lost both of them;especially on top of dealing with peyronie's. Any ladies reading this be honest. What kind of woman will want to start a relationship with a man with moderate to extreme peyronie's? I actually told some female friends recently in hopes of maybe receiving all the prayers I can get and need right now. They all avoid me now and won't talk to me at all, so you can't tell me women don't care or see men as lesser men if there is something physically wrong with our penis. These were friends that claim to be Christians and should want to provide comfort to a friend in need. I am not saying all women are like this at all. I'm just saying this kind of attitude is very prevalent among women, especially women from my generation and later;probably because of tons of porn and the media's focus on the importance of it all the time. I am just saying it is a bigger and sometimes depressing challenge for men with peyronie's and I want to praise those women out there that love a man regardless of this horrible disease.
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welshwales

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Re: Thank you to supportive partners! I don't have that comfort :-(
« Reply #1 on: November 22, 2014, 11:31:52 AM »

I think partners can have a hard time accepting and coming to terms with Peyronies Disease, just like we do. There is the added factor that they might feel some degree of guilt if the disease was triggered by a sexual injury. And there is the helplessness of being unable to really help in a constructive way. The stress seems to be able to flare other aspects of your relationship up and out of proportion. It certainly opened up a can of worms in my marriage, and it took time, patience and effort to get through.
I think one of the aspects that helped a lot in my relationship was a change in my personal attitude towards both my Peyronies Disease and my self-image. Building on your own confidence can make you more desirable. An overly self-conscious and meek attitude is not a characteristic that most women find attractive. If you don't let the disease knock you down, it will influence you partner's perception of you.
Fight the disease, but at the same time don't let it negatively influence how you live your life. Now I think 'so what if I've got bent dick, I can still use it' even if we have to be a bit creative in finding positions that work with the angles of my bends. The cialis works wonders, and I can perform even better than I did pre-peyronie's.
Like yours, my wife was initially put off by the deformity of my penis, and didn't ask or seem interested in the disease and how it was affecting me. She didn't want to touch it or look at it during foreplay. But that has all changed now, and it is she who asks about how the treatment is going, and if I'm ok with it all. Now that I'm no longer shy about it, the way that she sees me sexually has totally changed.
Well, that's my two cents anyway. Hope it helps.
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Cal30

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Re: Thank you to supportive partners! I don't have that comfort :-(
« Reply #2 on: November 22, 2014, 09:22:57 PM »

Fubar Penis,

I'm sorry to hear about how your wife has withdrawn from you and failed to show any support for you during this difficult season. Has she ever been supportive, caring or nurturing toward you in any way in the past? Was this a sudden shift in personality, or has she always been a bit distant and unattached emotionally?

As for sharing your condition with other women . . .
Were these women married or single?

I think it's a good idea to share this condition and your marital problems with other trusted men, but I'm not sure that sharing it with women is a good idea at this stage for you, brother.

I know how hard this can be and will definitely keep you in prayer. Feel free to PM me if you want to talk.
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Fubar Penis

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Re: Thank you to supportive partners! I don't have that comfort :-(
« Reply #3 on: November 28, 2014, 07:15:08 AM »

Cal30 and welshwales,

Thank you for replying and trying to build me up. :-) This has been the single hardest thing I have ever had to go through psychologically in my life, probably in most peyronie's sufferer's lives. I am definitely trying my best to build self confidence in other areas of my life, like keeping healthy nutrition and exercise wise;but then all of those thoughts of being a lesser man and a fraud kick in you know? Okay, so I'm getting my six pack abs back again, but why does it matter, since my dick is messed up. I keep hoping I wake up up from this hellish nightmare every morning. I keep thinking about what I must have done in my life that I am getting paid back for now. I know these are all bad thoughts, but I am so upset about this horrible thing I never knew existed until I got it. The feelings of hopelessness that trails along with this disease are ever so present and hard to kick, especially when I can't even hold my wife. I even, for a brief moment, thought about ending it. But then I thought of my son and wife and could never go through with it. Even though my wife has completely rejected me, I still love her with all my heart. She still thinks most of it is in my head and I'm just crazy. Keep in mind, she won't get anywhere near me physically and hasn't seen me naked since the accident; so she hasn't  seen my hard flaccid, curves, and shrinkage. She refuses to go to the urologist with me. I even asked her in a non sexual way to look, so she could see why I have low self esteem right now and need her to be by my side;and she got extremely angry and shut me out. I thought with with the intimate nature of the injury she would understand what I was going through and would want to reassure me that everything would be fine, but far from it. I go in to see my urologist for the 5 to 6 month follow up in 4 days and get the ultrasound done to see where the plaques are and what my next step will be. I really don't want to do the shots or surgery if I can avoid both. I haven't heard good things about either one, but I am having problems with traction and the VED. I'm going to try some things Old Man is helping me with to get back on the VED if possible. I am still still taking pentox, arginine, mild cialis, trazodone, coq10,and l-carnitine. Hoping those prevent any future plaques and calcification. I'm trying my best to be proactive with this thing, but keep hitting roadblocks with the mechanical stuff.
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NeoV

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Re: Thank you to supportive partners! I don't have that comfort :-(
« Reply #4 on: November 28, 2014, 10:39:55 AM »

Fubar, I'm sorry...

If you're wife is acting that way, there is only one answer, which is top stop expecting ANY communication from her or acceptance, and start accepting it yourself. Smile and laugh and say yeah my dick is a bit scarred up, from genetics or whatever, and do what you can.

There are several books and public speakers I highly recommend to people who have Peyronie's when it comes to relationships. Keep in mind that the girl will only accept you to the degree that you do. This is MORE true the hotter the girl is, and less true the less attractive she is.

This is a subtle point that most people will skip over entirely, but deserves much more discussion. Stay strong man, you are going to figure this out and you are going to stay positive and stay committed.
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Jonbinspain

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Re: Thank you to supportive partners! I don't have that comfort :-(
« Reply #5 on: November 29, 2014, 03:34:01 AM »

I'm really sorry to hear of your predicament, re your wife. This pernicicious disease is hard enough for any normal man to deal with. Does she not realise - or, I hate to say it, care  - that her attitude is the very worst she could adopt in these circumstances? 

This vile condition hits a man mentally every bit as hard as physically. The very last thing that he needs is the rejection of the woman he loves.

I had better stop before I go to far and say something I will regret. I don't presume to tell you how to run your life, but in your position, I would be considering my marital relationship very seriously!
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Fubar Penis

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Re: Thank you to supportive partners! I don't have that comfort :-(
« Reply #6 on: November 29, 2014, 08:44:58 AM »

My wife's reaction to the disease took me by surprise. I am definitely trying to wrap my head around it and come out the winner in the situation, but I'm having the hardest time  understanding or accepting my wife's total lack of support for me while going through it. I guess I  thought she was a bigger person than the person I am living with now. If she had breast cancer and had to lose both of her breasts, I would be by her side no question. I would be telling her it doesn't matter and she is beautiful the way she is, you know? I  would do everything I could to comfort her. My wife has done nothing to comfort me. I wake up every morning in a bed by myself, with a wife who doesn't ever ask how I feel or want to hug, kiss, or have any sexual contact with me at all. I still hear her make comments about football players being so athletic right in front of me, knowing how this disease makes you feel about yourself as a man, and knowing that she has completely rejected me physically and emotionally. I am only 5 months into this thing, and from the percentages I have seen posted by urologists, I might still have a lot worse changes to come. Jonbinspain, I am starting to think she doesn't care. My brother and his wife told me they thought she was definitely going to leave or cheat on me at some point and to get prepared for it mentally sooner rather than later. I have always been one to pride myself on my vows, but I'm starting to think she doesn't care about hers(in sickness and in health for example). NeoV, I'm definitely trying my best to stay positive and focused on hopefully a better future to come with advances in medicine, but our disease is called the bastard child of Medicine for a reason. Our cure will probably only be found as a side item to a possible cure for another disease, like how xiaflex was finally approved by the FDA. This means no rush or major funding put into finding a cure for us. Our disease I think is similar in a lot of ways to having bad teeth in the dentistry world, especially in the United States. Having straight or healthy teeth is considered mainly a cosmetic issue in this country and not a "real"  medical issue. Try getting any coverage for braces for example. However, how many medical  studies come out showing the effects of bad teeth on one's personal physical, emotional, and psychological health? Not to mention, try finding a job with messed up or missing teeth? I guess my point in my rant is until our medical system becomes less about what is going to make big profits and becomes more focused on their oaths and what medicine should  be about, helping people live healthier lives; there isn't going to be much in the way of positive and effective change for those of us who walk down this horrible Peyronies Disease road. I wrote my congressman recently a long letter expressing and describing in non-emotional details of course, the effects of the disease and the importance of finding a cure. Whether it will make  difference, who knows? But it is the only thing I know as a non-medical professional that I can do to try to affect change. I thought about even going to my local media and having them do a report on it, but my wife would surely leave me at that point. Sorry, I know I went off on a rant, but I am just frustrated, as I know we all are or can be at times. It's funny, because I used to be the guy who lit up a room and made people feel better about themselves. I love writing poetry and I write for friends and family, and started working on a book a few months back. Now, with my wife's rejection and this horrible disease, I feel like a shell of a person these days. I am hoping and praying that this stem cell research really shows promising results, and there will be continued funding for it. I really just pray to be one of those lucky 8 percenters that self heal from this nightmare.
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Cal30

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Re: Thank you to supportive partners! I don't have that comfort :-(
« Reply #7 on: December 04, 2014, 12:14:21 AM »

Fubar,

I know that you're going through a really hard time, and I know how serious this problem is for you. I wish had better advice to give, more to say, or more comfort to offer, etc., but the truth is, I'm still learning to cope with this myself.

One thing I can do is share with you some things that I have learned:

One mistake I made in the beginning was to try to bury the whole thing. Basically; 'just don't think about it, and it won't bother you.'

I also went into denial, 'it's not that bad, it's not really a big deal, maybe it's all in my head, maybe when I find the right woman it won't be a problem anymore etc. etc.' This was a mistake because it led me to do nothing for several years. Not only that, but the whole thing (peyronies/Erectile Dysfunction) would just sort of climb out of the grave like a terrifying zombie from time to time and I'd be no better psychologically equipped to deal with it than a year before. Basically I made no progress at all during these years. - I'm glad that you're not taking this route as I can promise you it's a waste of time.

Another mistake I've made is to try to imagine what my life could have been like had I never developed these problems. 'Wow, I'd probably have a much better job, more friends and be married by now. It would have been great!' - This is a huge mistake, as when I do this, I'm playing God and imagining the best life possible without peyronies/Erectile Dysfunction. This is another stupid, pointless and painful exercise to engage in.

Another mistake that I've made is to continually beat myself up for it and about it.

Another mistake is to let it bleed in to every area of my life and take away all my joy and happiness.

To sum it up:

Mistakes

1. Bury it. (psychologists call this blunting)
2. Deny the seriousness of it.
3. Be ashamed of it and hide it.
4. Don't talk about it.
5. Don't pray about it.
6. Beat yourself up for it.
7. Let it suck all the joy and spirit out of every area of your life.
8. Stop trying things.
9. Throw pity parties.
10. Blow it out of proportion.
11. Project it years into the future.
12. Imagine what life could have been like without it.

Here are some of the things that can help . . .

1. Try things.
2. Read and post on this forum.
3. Tell people you trust about the problem.
4. Acknowledge the problem and own it. (Don't go into the fantasy world of "what if I didn't have this problem.")
5. Don't blame yourself. You didn't chose peyronies or Erectile Dysfunction. Nobody does.
6. Don't let it take over your life.

Peyronies and Erectile Dysfunction are intense pyschological challenges for a man to deal with. They require an extremely high degree of maturity and discipline to be handled successfully.

Just as an aside, I'll throw in that this morning I took some Korean ginseng and L-Cittrulline first thing and it seemed to help me just focus on my work and not drift off into negativity land with this whole thing.

I'd encourage you to keep writing and keep trying things. You're not alone!

If you hang in there, sooner or later you'll be able to start sharing some things that you are doing that are allowing you to still experience joy and happiness in life even with peyronies!
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Fubar Penis

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Re: Thank you to supportive partners! I don't have that comfort :-(
« Reply #8 on: December 04, 2014, 01:04:05 PM »

Cal30,

Thank you! I know what you are saying it true. I just have to get my mind to that place, and not having the support from my wife right now has proven to be a very difficult venture. Her is a woman I was laughing with and making love to be one Mt accident that looks at me like I'm a freak now. I tried to grab her butt spontaneously last night and she got very angry and pushed me away. I am meeting up with someone locally going through the same thing tonight and we are going to try to play some chess, talk about other things, and relax a little.
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Jonbinspain

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Re: Thank you to supportive partners! I don't have that comfort :-(
« Reply #9 on: December 04, 2014, 03:53:15 PM »

Fubar;

Cal 30 has given you some good advice.

As regards your wife!  I don't know what to tell you. I know what I would do, but I can't tell you how to run your life. You have to make your own decisions on that one.
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Cal30

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Re: Thank you to supportive partners! I don't have that comfort :-(
« Reply #10 on: December 05, 2014, 10:43:51 PM »

Fubar,

I feel like you're basically taking on two huge issues right now that have become interrelated:

1) Getting peyronies.
2) Your wife shunning you.

Either one of these experiences by itself would be a huge issue with major challenges and pain, but both combined is a double whammy of intense magnitude.

As hard as it is, you're basically fighting a defensive battle of containment at this point.

Fight like hell to keep preforming at work, and do as much as you can to enjoy being with/bonding with your son and your friends. (How old is your son, btw?)

You've just experienced two huge setbacks that would rattle any man to his core, but you don't have to let these things ripple into every area of your life.

It's sort of like a battleship that has been hit, but not fatally. If the Captain decides the situation is hopeless, he can shout "abandon ship", and the whole thing will sink to the bottom, but if he sees a chance, he can order the crew to seal off the damaged compartments from the rest of the ship. The flooded portions of the ship would be filled with water and inaccessible, but the rest of the ship can still function as before.

Hanging out with another man with similar problems sounds like a great idea.

Have you been able to ask your wife why she has totally turned her back on you emotionally? Maybe she feels responsible and the guilt is so intense she takes it out on you with passive aggressive anger. Or maybe she's just really afraid and doesn't know how to show it.
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Fubar Penis

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Re: Thank you to supportive partners! I don't have that comfort :-(
« Reply #11 on: December 06, 2014, 07:00:31 AM »

Cal30,

My son is a teenager and I have tried talking to my wife on every level, and even with my psychiatrist; and she still pushes me away emotionally and physically. I tried to give her a hug one night and lightly grab her butt recently, trying to flirt a little, and she got really angry with me. She won't sleep in the same bed with me, except every now and then(like once every month-and even then, she puts all these things in between us, so I can't get close to her). It is total rejection on every level. I've mentioned seeing a counselor and it angers her even more. This disease is killing me inside and out, but I think her total rejection of me has been the most difficult thing to cope with right now.
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james1947

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Re: Thank you to supportive partners! I don't have that comfort :-(
« Reply #12 on: December 06, 2014, 04:24:17 PM »

Fubar Penis

I am jumping late to this conversation, but from what you are writing in your last post is clear to me that your wife don't want to be with you.
Sorry to say that, maybe you have to end those relations and to find someone that will accept you as you are.

James
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Cal30

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Re: Thank you to supportive partners! I don't have that comfort :-(
« Reply #13 on: December 06, 2014, 09:24:09 PM »

Fubar,

Your description of your wife's behavior totally perplexes me. It sounds like she has become more of a housemate than a wife at this point. I find this completely bizarre, and if I were in your shoes, I'd be every bit as heartbroken as you are.

That being said, I certainly don't encourage you to rush off to the courthouse to get a divorce. That could be like jumping out of the frying pan and into the fire at this point.

The fact that she will sometimes sleep in the same bed with you is encouraging, even if she is putting a bunch of obstacles in between the two of you. It's weird behavior, no doubt, but I feel like this suggests that there is still something there. Maybe you two are on life support at the moment, but at least there is still a heartbeat.

Have you talked to any of her friends or family about this whole thing? Maybe they can exert some pressure on her in the right direction (ie. back towards you).

Believe me, I know you don't want to start talking to everybody about peyronie's, but your marriage is on the line here. It's not fair that you have to take on all this burden by yourself. Your wife's behavior is wrong, but from what you've written, it is up to you to keep trying things. It sucks. It's not fair that she gets to act this way and you have to keep taking the initiative to save the marriage, but that's the way it is right now.

I'd really love to hear an amazing story from you some day about how the two of you got through this.

I will continue to pray for you in this.
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Fubar Penis

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Re: Thank you to supportive partners! I don't have that comfort :-(
« Reply #14 on: December 06, 2014, 11:10:14 PM »

James,
Unfortunately, I am starting to feel like she is moving in the direction of not wanting me anymore.

Cal30,
Thank you for your uplifting words and trying to lift me up. I  have actually talked to mutual friends. I have even opened up and told them I had peyronie's. Some of them couldn't believe she would treat me like this right now. Some of them avoid me now like I have the plague. From her total lack of positive responses toward me at all, I have a feeling her friends aren't steering her down the path of staying with me. If anything, it might be the opposite. Just wrapping my head around this ugly disease has been a continual struggle for me; and with my wife's total rejection to top it off, it has been a nightmare. I just keep praying that I will get better, that our relationship will get better. Today has been a tough one for me. Like an idiot that keeps coming back for abuse, I tried to get close to her again and got horribly rejected again. What really concerns me is the fact that my in laws have been avoiding me and haven't even asked me what I wanted for Christmas, which they always do by now. They have already asked my child and my wife what they wanted and they were even out shopping for their presents today and talking to her about it, but haven't asked me. I am starting to wonder if the writing is on the wall at this point and she is just biding her time until she is in what she feels like is the right time to call it quits and leave me this alone to fight this horrible disease. It is a saddening and depressing thought to think she would do that to me, but why else would she and my in laws totally reject me when I need them the most? And just to think everything was pretty much normal before I got this ugly disease. I am finding a hard time finding the strength to face what I might or rather most likely will and are facing. If there is a light at the end of the tunnel for me, I can't see it for all the darkness that looms over me.
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Cal30

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Re: Thank you to supportive partners! I don't have that comfort :-(
« Reply #15 on: December 07, 2014, 09:41:06 PM »

Fubar,

Your situation is a difficult one for sure. I'm the sort who will always urge you to hang in there and grind it out to see what's over the horizon before throwing in the towel, especially with a marriage.

That being said, this might sound like a contradiction of everything I have said up to this point, but if she leaves you now, then good. She is showing her true colors and is found to be lacking. It's not up to me, but if I were grading your wife as to how well she is doing as a wife right now I would give her an F.

You're not being an idiot by trying to get close to your wife! She is your wife! That's what she's supposed to be there for!

As for friends. This is a stress test. When the rain starts to come down, the fair weather friends get washed away like worthless dry leaves, but the real ones remain like strong, deep rooted oaks.

My parents got divorced when I was about 13 and it seemed like a huge tragedy.

My dad left my mom for a wealthy woman (my mom was quite poor in comparison). Meanwhile my mom struggled to raise me and my brother alone. It looked like my dad had come away with the win and my mom had been left in the dirt.

My mom did a good job of insulating me and my brother from all the horrible feelings she experienced as a result of being left by my dad, but I know that she endured many hard years and a lot of pain and loneliness as a result of my dad's decision.

Fast forward to today and my mom has a new husband. Together they've accomplished more than she ever could have with my dad. They have some beautiful land in California and they are cultivating it. (This has been a dream for my mom all her life.) She actually told me once, "when I look at all I have now, and I look at your dad, I am actually pretty glad that all this happened."

My dad is pretty much living in survival mode these days and he and his new woman are both pretty poor now. He's still with the woman he left my mom for, but she holds all the cards and he has to follow her game plan. I don't feel like the whole thing really worked out all that well for him as it did for my mom.

Hang in their, Fubar. Whether you and your wife will make it through this, I do not know, but don't you be the one to give up first. If she divorces you then the guilt is on her. Until then, keep trying things. Keep trying to make it work.

Stop trying to read the writing on the wall, it will drive you crazy. Just take one day at a time and push on through this. You can't control the outcome here. All you can do is control your response to all of this and do the best you can.

I will keep praying for you on this.

Sometimes the rain comes down to wash away things we don't need so that new things can take their place later on.
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james1947

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Re: Thank you to supportive partners! I don't have that comfort :-(
« Reply #16 on: December 07, 2014, 09:56:17 PM »

Fubar

By the end, whatever decision you will take regarding how to manage your future you should take according to your feelings and your rationals. Do not be influenced even by the best friends, and whatever the consequences would be it will be your responsibility.
It is good to vent, all of us need that from time to time, but again, decisions should be yours.

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Fubar Penis

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Re: Thank you to supportive partners! I don't have that comfort :-(
« Reply #17 on: December 22, 2014, 06:19:36 AM »

Thanks for the replies and advice guys. Sorry, I haven't had a chance to reply more recent. I had another health scare come up and had to deal with it right away. I hope to improve from it soon so I can resume treating my peyronie's. This year had been a challenging one for sure. If you celebrate Christmas, I hope you have a wonderful Christmas this year. Thank you for all of  prayers. I have been praying for every one of us lately too. :-)
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