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Women Speak Out about Peyronie's Disease

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Christine

Hi Susan,   Glad to see you back again.  We have missed you!   And yes you make a great point about faith and how it can carry us through during these very trying times of dealing with this condition.  If it wasn't for my faith in my savior, Jesus, I can say that I would never have made it this far in dealing with my relationship or life in general.   Continue to seek His wisdom and comfort and you will be amazed how better each day will bring.

As far as the topic on this forum, it has been not addressed due to the fact that we are a vast community here with many different beliefs and in respect to the guidlines set forth, discussion of religion of any kind is discouraged here on the main forum.  However, if you want to PM me or bring this discussion to the Ladies Room, I am sure that we can toss the topic around a bit.

I am sorry to hear about your mom and I will add her as well as yourself to my prayer list. 

Blessings to you,

Christine
May the Lord Bless you  :)

RiseNShine

Good Morning!
I just found this board and was very excited that there was a "womens" section because I really need some good sound advice.
I have a very unique...or so I think..situation. Late last year the "love of my life" called after 13 years. We had been involved in the early 90's for over 3 years and he pulled a "Cut & Run" that devastated me for quite awhile. He did call me several times afterwards...he had moved back to his home state... but I was still so hurt and angry by the supposed rejection the conversations were not pleasant on my end. I think I broke my phone hanging up the last time :D Fact I'm sure i did.

We are now in our early 50's and much has happened to us both over the years, each with a unsuccessful marriage well behind us and now each dealing as home caregivers he for his elderly mother and me for my 27yr old physically disabled daughter(her injury happened after he left) as well as being single parents.

He's been divorced for 3 years and says he's had my phone # for over 10 yrs. While he was married he says he called my at least a dozen times but hung up before anyone answered... then again after the divorce not knowing if I was still married. He said it took 3 beers ...he rarely drinks...to get the courage this time and almost hung up when my teenage son answered but asked for me anyway. I can tell you a day never went by that something didn't remind me of him.

When he called it was as if the 13 yrs had totally evaporated. We talk once or twice daily and plan to reunite sometime this spring. The logistics of travel and as caregivers have actually been a blessing because we've had a great chance to talk, think things over & reconnect and I can tell you there is nothing that hasn't been discussed. Which brings us to why I'm here. Within 2 days of his first call he brought up his Peyronie's which he has been dealing with for 2 years. I specifically asked if this was a factor in his divorce and he says no as he wasn't diagnosed till a year after the divorce was final and they had been estranged for 5 years prior to that.I will have to trust him on that but it honestly doesn't matter to me.
I have sent him any and all info I could find because it really is very difficult for him and I can feel his pain and the wistfulness of how we were years ago. He continues to go to his urologist and they did an unsuccessful procedure on him 12 months after he was first diagnosed...it sounds like they did a excision of the plaque that further bent the penis ..he says it is literally an "L"  and the plaque has returned...which sent him into a deep depression that he is being treated for...he also sees a therapist. I've dealt with so many medical issues with my daughter that I am very comfortable dealing with "situations" so there is no fear or rejection on my part.

When we finally get together...probably next month for his birthday...I need to know the best way to make this easy for him. Will we be sexual? That is probably my biggest question..I don't want to do anything that would cause him to feel rejected or less than. If we are how? So any and all information would be appreciated.

Thanks
Melissa


Tim468

Hi Rise-n-shine,

Several quick thoughts. First the sex part. It might be worthwhile to discuss this up front. Perhaps you could make a no-sex rule before the visit to remove the anxiety that wondering might engender. OTOH, if you are thinking very romantically about him and he about you, you might need the rule even more! Consider it... I know that I wuold be thrilled to hear a woman say something like:

"I am really anticipating your upcoming visit, and I have been fantasizing about sex together and how good that could feel. But I am also anxious about rushing that part of our relationship and us screwing up by moving too fast. I'm also worried that you might be real anxious about how we might do with sex because of the Peyronies. Would you be willing to make a pact NOW that we will not have sex (though it might be real fun to come close!) during your visit to give our relationship some time to grow in closeness - especially given our past?"

For me to hear that would be very relieving, because it would remove the concerns about performance and acceptance. Moreover, it would confirm to flirty aspects of the dialog and excite me to know you wre even thinking of that - often women are not as clear about their desires as they think they are, and men are often in the dark about her desire.

Finally, it might be worthwhile to look at the reality of why you did not persist as a couple before you jump in. There is often an imagined euphoric recall of prior events that skims over the negative feelings at a time like this. You might recall the infatuation you felt, but forget the arguments or the pain. Here is an on-line article I found through google about this topic - might be interesting.

http://www.aarpmagazine.org/lifestyle/Articles/a2004-07-20-mag-oldlove.html

Tim
52, Peyronies Disease for 30 years, upward curve and some new lesions.

Hawk

Welcome to the PDS Rise-n-shine.  As a new member I want to thank you for your post and make sure you are aware of the difference between the 'Women Speak Out" topic (this one) on the main forum, and the PRIVATE, FEMALE ONLY section that only registered women can see.  Christine has added you to the Private Women's Forum" so you now have the option to post in both places.  The only reason I mention this is to assure you understand the differences in the privacy of the separate areas. 

As men, we appreciate input from the women and hope we can offer useful perspective to each other that we can never get alone.  I think you can see the benefit of this from Tim's response.  Women are welcome and encouraged to post in all areas of the forum.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
[url=http://www.peyroniesforum.net/index.php/topic,872.0.html]Hawk - Updated 10/27/18 - Peyronies Society Forums[/url]

RiseNShine

Thank you both so much for responding.

I had read about the women's site but at this point I'm more concerned about him than myself and am looking for a man's perspective on how one copes with relationships. I am sure there will be a time soon enough were I'll need advice from my own camp.

Since he has been dealing with it for several years and I am essentially new on the scene even though we have history,I thought it unbelievably brave of him to throw this on the table so early. We had agreed that we would only speak truths and I believe we have.We didn't break up because of other people but his fear of commitment...which apparently had resolved itself 6 mos. after he left the state...that was the phone calls that I wouldn't let him get a word in edgewise... because I was still smarting at what was my very first "rejection". Pride & Love are like oil and water.

With a 13 yr gap between our last phone calls and 14 yrs since we've seen each other I find him to still be the same person, older of course but still pragmatic as hell....
which I loved until it worked against me ;D

Anyway thanks and any of you guys that have any more tips...they will be "muchly"  ;)appreciated
Melissa

harchunk

I myself was just diagnosed w/ Peyronies Disease and you will find out that you learn to apreciate even more all aspects of being intimate.  Oral sex, foreplay etc...... ;D



Quote from: RiseNShine on February 13, 2007, 11:38:47 AM


Quote was removed for duplicating a post by quoting it in its entirety.  Quotes should be confined to quoting the specific portion of a post one is responding to.  Hawk

Chichibug

hello to all of you, and thanks for reading.

I have been lurking on these forums for awhile, and have just signed up under the women's only area...  and as good as that forum is, I can't get a man's opinion there.

my husband and I have been married for 7 years, and dated about 2 before that.  he wanted to be sexually active with me at the beginning, and mentioned that he had peyronies (there was an ever-so-slight curve).  after that he really became distant over the years, as this condition progressed.  we are now at the point where we qualify as a sexless marriage.  (we can go from once every 6 months to once every 3 months... it is deeply depressing and lonely to me.)

I love my husband.  I love everything about him.  i mean EVERYTHING.  he is awesome, amazing, beautiful, brilliant, giving, etc., etc.,...  but he won't let me love him.  I am kept at a distance.  kisses are nothing more than a peck (the same as he'd give his mother or sister).  hugs are sideways and short--and if I hold on too long, I get pushed away, with a pat on the head.  I am dismissed, ignored, chastised, teased, etc., when I try to get close--not even asking for sex, but just touching in any way...  there are times that i revert back to using humor (i am the ultimate jokester) by flashing him or touching him out of context--but i get told 'you're funny'... dismissed again. 

when we do have sex, I tell him that I LIKE the curve--and it is true, true, true...  it 'touches' me in a great way--and it's like we are made for each other.  I don't know if he doesn't believe me or what, but he doesn't respond, and it certainly doesn't encourage more sex... 

he doesn't talk about this.  he gets cards from the urologist reminding him that it's been x years since his last appointment, and he throws the cards away.  the doctor (this was at least 5 years ago) prescribed to him the vitamin e I read about here... and it just made him really sick and didn't do any good anyway...  I think he doesn't see any hope. 

I told him that I found this site, and forwarded him some info on one of the docs here... I emailed it, and then as I pressed 'send' i felt like I had invaded his privacy and felt bad, so I called him to warn him of the incoming email... I asked his forgiveness for sending it... and told him I didn't want him to be mad... he said that he wasn't mad... and said he thought this doctor sounded good.  but that was over a week ago and there has been no mention nor action since. 

so here I am... I have questions, but can't ask my husband...

does peyronies hurt?  I mean, does sex hurt?  after sex?  I certainly do not want to hurt him.

does peyronies make it impossible to ejaculate at times?  difficult?  painful?

does peyronies lower your desire?  (I know he had active sexual relationships before me, and it seems like it's only me that he's had the lowered desire with...  I keep thinking it's ME.  I am disgusting, repulsive, fat, whatever...  but I am told by friends that i am not any of these things...  I am 5'9", 130#, size 6...  not ugly--but i feel that way--, etc...  but that's another thread.)

is there hope???  any real hope???  it's been years since its onset, and it has definitely changed him physically.  it's a complete left hand turn now...  but I must say, it's absolutely beautiful to me.  (sorry if that's too graphic)

how can I tell him/show him how I feel?

oh, and the added 20 dollar bonus question:  I bought some sex 'toys', on the advice of a friend... I thought he'd enjoy the added spice, but now think better of even telling him I bought them.  should I keep them to myself?  I would hate to have him think that these 'toys' are somehow a replacement for the real thing... 

thanks for reading, thanks for understanding, and thanks (in advance) for any replies I might get.

sincerely,
Chichibug

ps. if he comes here, he'll know who I am... my screen name is a dead giveaway... if you see this, dear husband, I LOVE YOU and want us to be close again.  I miss you.  I want you. 

Steve

Wow, I can feel you pain.  I know what a sexless marriage is like--we were down to once a year until my Peyronies Disease popped up, and that's been 2 years ago!  But that's for another thread.

Reading your story, and from my own experience, I'd like to put in my 2 cents worth.

For me at least, no, sex/erections don't hurt, but I've read of many sufferers who do have pain, at least in the beginning.  It usually goes away with time.  Also, I don't think that there is anything that would physically prevent ejaculation, but there's always that psychological component.

Based on your story, I think that the problem isn't with you, or physically with your husband.  I know that I and many others often consider themselves 'deformed', and unattractive/undesireable to our partners.  Usually (I think) these feelings pass with a loving partner and time, but it sounds to me like you husband is still feeling that he's the one who's not desirable, not you.  Just as you keep feeling that you're at fault "i keep thinking it's ME", I think he's convinced himself that it's him.

If that is his state of mind (putting myself in his shoes for the moment), I think that if he were to find the 'toys', it would just reinforce his feelings of inadequacy, so I'd suggest getting rid of them at least for now.

The best thing would probably be to see a shrink, but the next best thing would be to get him here on the forum where he can talk anonymously to others with the same problems (and some much worse than his, I'm sure) and see how we're dealing with Peyronies Disease.  You might want to find some good posts/discussions, and have him read over you shoulder for a while.  I'd think that once he realized that he's not alone or deformed, that he'd be willing to talk with others here on the forum, and I'm sure that that would go a long way to helping him cope.

Good luck,
Steve
Topical Verapamil,
12 Verapamil shots (ouch!),
Now VED - Too many Weeks,
Still 70 Degrees :(

Rico

Some men don't like being smotherd, maybe cooking a good meal for him and saying something nice is all he wants, and there is nothing wrong with that.... I don't know how old you are, but for me a older woman flashing herself I don't find that sexy..... and a peck on the check or small hug isn't bad either, one doesn't have to play tounge hockey to be kissed right..... I think the problem is more you than him.... get a hobby... most men don't mind playing golf or going fishing ect.... all this wanting to make love all the time or have this great sex life is just more pressure on him, the Lord knows men have enough on them the way it is.... maybe you should look more again at the things he brings to the table instead of worrying over not getting enough...
"The Sun Also Rises"

Fighter

Rico that was mean! Why shouldn't she want sex no matter how old you are? Don't listen to him! It is not you no matter how old you are! I am almost 50 years old and I love to have sex and be intimate with my wife. My opinion is that maybe he is having Erectile Dysfunction problems? I know from being on this form that many of us have Erectile Dysfunction problems from Peyronies Disease? Is your husband in pretty good shape? If not I would suggest that you and your husband start eating well and working out. I found from doing this with me and my wife that when you workout you start to feeling good about yourself and that enhances you bedroom activity. I don't want to say that you and your husband are out of shape but I know from my own experience that this has helped me with this terrible disease. Try it... what do you got to lose?

Chichibug

steve--thanks for your reply.  I think you're right, he does carry shame and feels uncomfortable with his body.  I will drop another hint about this board.  maybe he will try to at least read here--I don't know if he'd ever post, though...
I have tried to get him to talk to our pastor or a counselor.  he won't...  he wouldn't even bring it up. 
I also agree with you about the 'toys'.  I have kept them well hidden, and ignored the advice to just bring them out...  I think it would be taken wrong.  now if he ever said, 'hey, i'd love to try... (fill in the blank)' and I happen to have the toys right there, then cool.  :)
I am sorry that you felt deformed in the slightest.  we all have 'something' that is different, and there is beauty in those differences.  I hope that things have turned around for you. 
thanks again for your honesty and informational reply.  I appreciate your time, your clarity, and your openness.
--Chichibug

rico--wow, your post really hurt me.  I mean, really.  I don't 'smother' my husband.  not in the slightest.  I cook good meals all the time, and keep an immaculate home.  i say nice things all the time.   I am not the type to say (or even consider saying) anything that is not uplifting or 'nice'.  and 'tongue hockey'?  a peck on the cheek can be a nice change, but when that's 'all' the physical attention you get from your husband, it gets a little (a lot!) stressful and lonely.  a hobby?  I have lots of hobbies.  I have lots of outside interests, and not all of my personal-worth verification comes from my husband.  I do not pressure my husband for anything--not sex, not anything.  I don't even talk to him about it.  I do appreciate what he gives to the relationship and I am often telling him and others how totally proud I am of him (i thought i had clearly illustrated this in my post).  and not getting enough???  two or three times a year--do you consider that a reflection of a healthy marriage?  not two or three actions of 'intercourse', but two or three times that we are even close physically?  and of course you meant to hurt me with your post when you addressed me 'flashing' my husband.  I am often taken for a college student and am still carded.  I know that I am sexy and fun--and that's the message I am trying to send 'sexy and fun' to my husband when I do this.  (you act like I do this all the time...  I do this once in a blue moon...)  I don't understand why you posted this angry message to me.  you think this problem is more me than him?  ouch.  I suppose your post is just the reason I haven't posted or talked about this with anyone.

oh, and i am in my 30's.  my husband is in his 40's.  not that that matters.

and my husband has hobbies, too... 

Chichibug

hi fighter,
thanks for sticking up for me.  I am SO glad that rico's wasn't the first (or last) reply.  I would have never come back. 
both my husband and i are in really good shape.  we eat really well, and get a moderate amount of exercise.  his job allows him to spend some time in a gym, but lately he hasn't had time... so he's been walking a lot. 
I would love to be able to 'talk' to him about Erectile Dysfunction and the peyronies.  I think after learning more of your perspectives here I will be ready very soon to just start talking and tell him all i have learned here. 
my husband and i are usually doing projects together--this is fun for both of us.  we built a huge greenhouse, a woodshed, and plant trees around the property.  we are always doing 'home improvement' projects and right now are planning another addition to the house.  we work well together.  like I have said, he is a great guy, and he can 'do' anything.  it's really amazing.
thanks for your support.  I do appreciate it.
--Chichibug

Fighter

You sound a lot like my wife and I... we are the same we do a lot together and we are in pretty good shape. The only thing that doesn't sound like us is the sex department. My wife and I have a great sex life and when Peyronies Disease came into my life I thought it was going to end my sex life. I have had Peyronies Disease for about 2 years now and in the beginning it did hurt but now it does not. As time went on with this disease some Erectile Dysfunction sat in but I really tried working out harder eating well and taken supplements. Now the Erectile Dysfunction does not affect me too much but I think I owe that to this form because there is a lot of information here and it really did help me. I would try to get your husband to start reading about the different ways you can fight this disease. On a more lighter note... try surprising him one night with a romantic dinner,wine, ect... when he comes home from work. Then after dinner take him and put on the sexiest thing you can find and give him the most seductive dance you can come up with. That always works for men... we like change... do something different. Guarantee... he likes that! LOL 

Chichibug

howdy again fighter,
i am glad that you and your wife didn't lose your sex life as the peyronies set in. 
i have tried the plan you laid out--the dinner with wine and sexy lingerie... i threw away all of the lingerie because he didn't like it at ALL.  that was years ago.  maybe things have changed enough now that i should give it a try again...  i have offered to fulfill any fantasy he has (with the one exception of not including other people) but he says to keep things like they are.  i know he is a shy person in this way, but i can't believe that there isn't just one fantasy in that head of his...  ::)  heck, i have some of my own, but he has never asked.... ;)
i will try this plan again.  maybe after that 'works' i'll bring up this board.  who knows?  the timing isn't mine... ;)  when it's right, it's right.
thanks again, and i am sooo happy that you are enjoying your life. 
--Chichibug
ps what treatments are you using for the peyronies?  what supplements?  my husband takes some supplements (mostly just herbal antioxidant types), maybe i can slip in some more for him.  :)

oh, and i have been meaning to say that i LOVE your picture. 

Fighter

I will PM or respond later on what supplements I have tried and use. I am on my way out the door. If you go to the "Oral Treatments - Vitamins, Prescriptions,Herb,Supplements" Thread... you can read and get a lot of information on the different things the guys have been trying.

That picture is exactly like... well use your imagination!

Steve

Fighter,
Thanks for calling Rico out on an overly harsh post.  He sounded quite angry at Chichibug, and I'm sure that he didn't mean anything personally (as I'm also sure that he doesn't know her).  I can only assume that he has some issues of his own, and her post struck a nerve.
Topical Verapamil,
12 Verapamil shots (ouch!),
Now VED - Too many Weeks,
Still 70 Degrees :(

Tim468

Steve, I think that you are right about Rico's post. It was uncharacteristically harsh, but somewhat characteristically too quickly posted.

All of this stuff is hard to deal with and we all deal with it differently. The problem is not sex, it sounds like it is communication. All attempts to communicate directly about this problem, as well as indirect communication are failing to get the desired result.

I would sit him down and explain that your happiness as a couple requires that he give more to you than a peck on the cheek. I would ask him if he is suffering over this or if he believes that this is good enough. If he wishes it was better than ask him if he would be willing to join you in seeking help with it. Then I would look for a couples therapist who speciallizes in sexual dysfunction, because that is what this sounds like.

He may need to have his testosterone levels checked too - too low and one's libido takes a walk. If he can intellectually realize it is not enough even if he feels OK about it, then he might be willing to look into it.

Tim
52, Peyronies Disease for 30 years, upward curve and some new lesions.

Hawk

Chichibug,

Please forgive me for doing something very uncharacteristic.  I am posting to you on this thread even though i have only rapidly scanned the posts since yours and Rico's.  I saw Rico's post right before I left for work and could barely endure not responding.  As we approach 8,000 posts (I am sure I have read over 99% of them) I have never seen a post I was more shocked by than Rico's response to you.  I am glad that you got additional perspectives before I could return and post.

As you can tell from the posts, Peyronies Disease may hit all men in similar psychological ways but since men are not all the same, we react to that impact in different ways and from different perspectives.  I truly felt for you, your plight, and what your husband is going through.  I completely understand that it is because of your respect and admiration of the other things that your husband brings to the table that you desire intimacy with him.  Regardless of your age, if you are even reasonably responsible over your physical condition, a flash should be welcome flirtation that most men would enjoy on several levels.

I agree that communication is the key problem.  Pain or problems ejaculating are very unlikely issues.  Men can easily ejaculate without an erection.  I also agree that the toys should be his idea until communication convinces you it will be a boost and not a huge, hurtful setback.  If he suggests it and you pull them out of the closet, that is a risk.  Until communication is established, you cannot know if your husband is just suffering from a low sex drive (common in many men without Peyronies Disease), or if he is so distracted by his loss and feelings of inadequacy that he cannot be carried away by the moment.  Maybe it is neither.

In addition to the normal advice of: have him come to the forum, go to counseling together, cultivate conversation about hopes, dreams, goals, fears;  I would recommend something like reading the book, "The five Love Languages" together.  My wife is a visual learner and i do great as an auditory learner so in our case, she often reads and I listen, then we discuss.  Though we have read many books together, that book ranks very high as one that gave me a compassionate tug over things I had been inconsiderate of.  I am referring to things that in no way related to Peyronies Disease, but the point is that reading and discussing this book generated deep thought, consideration, and communication, between us.  Since that is likely a component of your marital issues, it may be a catalyst to renew a more psychologically intimate relationship.  If it does, the rest will work itself out.

Finally, read every word of the "Psychological Aspects" topic.  This is a psychological disease and for that there is known treatment and full recovery available.

Thanks for your post and the insight you shared.  It was a huge contribution.


Hawk

PS: Your comments about getting men's opinions on the main forum are true.  Peyronies Disease is a couples disease and we need perspective from each other.  The Ladies Room is here to enhance the support the Peyronies Disease Society provides, it was never intended to segregate us from each other.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
[url=http://www.peyroniesforum.net/index.php/topic,872.0.html]Hawk - Updated 10/27/18 - Peyronies Society Forums[/url]

Rico

Chichibug:

I just want to say I'm sorry if  you took my post as a attack on you. I just wrote what I felt from my point of view. Sometimes less is better. People on here  can say, oh put a stripper pole in your bedroom or wear this or that, but I disagree with this.

Peyronies isn't always the problem also, today over 50% of marriages have problems with sex or intimacy, one of the couple seems not to be getting what they want, and between 10 to 20% of all couples say they don't have sex.... so once again I don't think it is a just a peyronies issue....

I do believe in tough love also, I know that men sometimes don't feel comfortable talking about some issues, and probally wouldn't want there spouse to be putting information out in public without them knowing it, this is a trust issue.... I know you say nice things also about your husband and are trying to save your marriage.... I believe in my heart what I told you with a pinch of salt might be some of the better advise for you, or I wouldn't of said it. People are like mirrors, what they reflect will be reflected back to them.... one can feel a sense of not being content from there partner, and this can drive them farther away... it is not your fault or your looks or anything like that and you have to remember this..... maybe taking time to discover something new you always wanted to do and let this go for now and give him space, step back and adjust might be better for the relationship.... if you drag him to consoling, it could back fire, but then you have to say, I'm willing to walk away from the marriage if I can't resolve this, for it might come to that....

You have to also understand that men have different degrees on peyronies and supplements aren't going to cure a bad case.... I'm sure at this time also your husband feels that he is not meeting your physical needs and emotional needs..... I know you can't fake this, so at the end of the day you have to say, if it doesn't change, what will I do.... for there is a good chance it might not....  remember again it is not you, life gets in the way sometimes... some people show love different also.... I would think about buying a lap dog also, they have unconditional love...fill you with kisses all day.... I do hope in my heart that you will find peace soon within yourself about this matter and remember it isn't you and many people find this in there marriages.... it seems we always want what we don't have also, and sometimes what we really need is right there but we don't see it....

God Bless..

Rico
"The Sun Also Rises"

Hawk

Chichibug,

I have to thank you for one other thing.  There is an old saying that says silence is golden because it hides so much. 

Thanks for getting Rico to express his true sentiments about relationships and how women should satisfy their needs.  One might wonder why Rico does not advise all of us to buy a lap dog, forget about our broke dicks and stop whining about women not understanding us.  I guess it only works one way in some peoples world.  I wonder if Rico would have the same view of women withholding intimacy from a relationship? 

OK, I am done wondering now  ;D

I am a 57 year old traditionalist and rather conservative, but I for one, place way more value on women than that.  This sentiment makes my blood pump like a good workout.

Please consider the majority view you will find here.

A quote from Rico to stun the senses:
QuoteI would think about buying a lap dog also, they have unconditional love...fill you with kisses all day....
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
[url=http://www.peyroniesforum.net/index.php/topic,872.0.html]Hawk - Updated 10/27/18 - Peyronies Society Forums[/url]

Fighter

LOL... Hey Rico... I got a little female lap dog and I got to tell you that she just don't make me happy like my wife can? I think Rico has found the solution to all of our problems. LOL

Tim468

Dear Chichibug and Hawk and others,

I am not going to defend Rico for trying to say what he says the way he says it. Sometimes I struggle to follow his logic and get confused about it - and when that happens, it is more or less like a Roschach test of where *I* am when I read it...

So here is an alternate view of what I heard him saying; or let me say it in my own way:

When a partner in a relationship withdraws, we may be unable to reach them or to "make it better" no matter what we do. To that extent, we are thus responsible for how *we* feel about what is happening - our partner is not responsible for our pain or suffering. Looked at that way, one can find some things to appreciate and love in a relationship, even while grieving the losses. I heard Rico trying to suggest ways for her to make herself feel better that do not involve her husband changing. Since it is *possible* he will not change, suggesting she find a way to care for herself is not bad advice.

I just think it was spectacularly inartfully given.

A lot of us try to "fix" problems. I could suggest she seek marriage counseling, or decide whether or not to end the marriage, or to have an affair - I could come up with all sorts of "solutions" to her problem. But ultimately, when our partner cannot fulfill  our needs, we have to decide if that is a "need" or not, and if there is anything we can do about it. Sometimes we simply live without that which we want. Rico's "Go tough" policy doesn't work for me, though.

I hope that the communication can get better in Chichibug's marriage. The withdrawal may have nothing to do with Peyronie's Disease - I bet the odds are even in that regard. It could be a million other things, some scarier than others. I'd want to know if he is asexual in general, or if he is simply turing off to her. Is he afraid? Indifferent? Compassionate? There are lots of ways to go forward.

But I think that I would suggest that she start with herself. She can go to a therapist and see what her options are. Sometimes we want to shake our partner awake and say "Can't you see where this is pushing me??" (away), but doing that often simply makes them feel put-upon and angry. So for me, getting help with ME is the first response I have to relationship problems in my life. I hope it can work out for the best, with a happier and wonderful ending.

And you know what? Along that path, a nice loving dog ain't that bad! A lap dog is great in fact - it just is not enough.

Tim
52, Peyronies Disease for 30 years, upward curve and some new lesions.

RiseNShine

Tim, I am going to have to agree wholeheartedly with your take on Rico's comments. That is how I read it and was shocked at the responses.
Sex  is very emotional  for both males and females and with our puritanical streak we walk a thin line of love and hate...we hate that we love it so much.
I'm just curious why Chichibug is upset with her husband...she came into the relationship already knowing there was a problem physically.
We women think we can slap a band aid on anything and make it all better. When it comes to boys and then men we need to realize that just ain't so. I raised my 18 yr old son by myself while dealing with horrible disability issues with his sister who is 9 yrs older. Thank God I found a book when he was quite young that opened my eyes about males...I am the only sister of 3 brothers my ex husband was from an all boy family so I've been observing men for years without ever realizing it and believe men get the short end of the stick because of what society expects from them.
The book is called "Raising Cain: Protecting the Emotional Life of Boys". After reading it, it was like the fog lifted and things I had observed over the years were validated. Males are MORE sensitive that females are but nature has forced them to shield their vulnerability from the get go. Your husband is hurting emotionally that he cannot be all you want him to be, hell he can't even be all HE wants to be.

Love won't cure anything but "compassion and empathy" should be carved in stone on the marital headboard most especially the  peyronie's  sufferers.

I am of course speaking as someone who is entering a relationship with a peyronie's sufferer BUT I have armed my self with as much knowledge as possible and lowered expectations so we can't go anywhere but up! ;D

14 days till we meet and sex is on his agenda...at HIS request.  Who knows what will happen no matter I am prepared for just snuggling in his arms to a crazy erotic adventure. I give him permission to call the shots as long as it's mutual and no one gets hurt. ;D While it's been over a decade since we've been together we feel as though the clock stopped after the last time we saw each other. Perhaps we are fooling ourselves but that will be for time to decide as my eyes are wide open :)



Christine

I have sat back and read this thread and FINALLY I have had the opportunity and time to think a bit and would like to give you all my two cents on this subject.   I may get change back but that is the beauty of this forum.

Chichi's situation is similar to my own therefore I can not only understand her position but empathize with her feelings.  When you enter into a marriage with a man that you love and adore you expect certain things that would always be a constant in the good times and in the bad times.  This being that you would feel loved by this man and that TOGETHER you will partner to work through the struggles ahead.  Granted this expression of love can take many forms.  For some it can be just verbal or just in the things that one does for the other (ie, work, support, financial) but most women will also need and desire that old fashion expression of love in the form of physical contact.  I am not referring solely to sex in the intercourse form.  I understand that Peyronies Disease does horrible psychological things to a man and causes them to retreat into themselves and avoid anything that would cause sexual stimulation for fear that they cannot complete the task. Understanding the situation does not always make it easier to take from the other side. 

When you are still doing all you can for your husband in the normal sense, like cooking good meals, taking care of the house, mending socks (well I don't do that, I just buy new ones), you question, what do I need to do to get him to pay attention to ME and just take me in his arms and let me know that I am the woman that he loves, that he adores, and that he will cherish for the rest of his life.  You want to be told that no matter what happens, that he will always be there for you and that he does care about the pain that we too are going though.

Here you find a women who loves her man with all her heart and is held at arms length at all times.  You don't get even the slightest touch or emotional encounter.  You don't get to feel his arms around you or engage in a kiss that feels like it's from a man that loves and adores you.  If you get a peck on the cheek on his way out the door, you then count that as your sexual encounter.  When you attempt to initiate some kind of activity you are pushed away and told to leave him alone.    Now at first, a person can take that kind of rejection and understand it's origin.  But after weeks, months, and even years it can start to drain on you.  You hate any kind of conversation with friends when they speak of having romantic evenings with their spouses because you know that can never be with yours.  I used to look away at horrible acts of violence in movies but now I find myself looking away at romantic ones as well.  It is just too painful to see what I cannot have and want so much.   It is very hurtful to feel like your husband (while you know that they do love you) cannot try to see past his own shortcomings and at least attempt to give to you the kind of physical contact that we as normal women would love to have with with a man that we love and adore.   There are no expectations here.  Nothing ventured, nothing gained, But that attempt would speak volumes.  The knowledge that the man cares enough about your needs enough to put his inabilities aside to try to meet them to the best of his ability.   

For better or worse......that is the vow we took when we married.   Therefore, given that we do love our husbands and do not want to leave the marriage, we are only trying to find a way to make this situation go from worse to better in the realm of any kind of emotional intimacy.   

Yes,  I agree that some kind of marriage counseling will be beneficial to the situation but that itself leads to another problem when you are dealing with a man who holds to the theory that you do not air any problems to strangers that lends to a whole other issue.  He won't talk to you....he won't let anyone else help you open that door to conversation.  Where do you go from there???

And for what it's worth....we have TWO lap dogs, and they get far more loving attention than I have received in I don't know how long!  It's sad when I am jealous of them!
May the Lord Bless you  :)

Tim468

Christine, thanks for your post.

I reread my post, and I hope that I am not coming off as non-compassionate for Chichibug's plight. It IS a plight in that she is suffering in her relationship because of intimacy issues. I have learned the hard way, though, that my healing in my marriage (which ended in her having an affair) started (and ended) with me. In that situation, my wife withdrew emotionally and physically, and knowing she was in love with someone else was terrible; the pain of being replaced is pretty profound. I think the pain of being neglected would be about as bad, IMO.

My point is that Peyronie's or not, she has to take care of herself. If he cannot or will not try to make what is not right, right, then she may have to end the relationship to find her own happiness. But I have also heard of women or men who have stayed in marriages that had lost a lot for other reasons (economic safety, for the kids, etc). I one day came (not overnight) to the conclusion that I could be happy alone, and invited my ex-wife to leave. Now, about 7 years later, I am in a happy relationship and doing well - even though my Peyronie's is actually worse.

I followed my own path, and when I was sticking to the marriage "no matter what" I was thought a fool by many, and when I finally decided it had to end, I was thought to be coming around "too slowly". But for me, the main thing was finding a way to be happy by myself, and that did not depend on her loving me, in the final analysis.

I do not haves a strong "druthers" about Chichibug's marriage - but from what she says, it seems that she is hoping greatly to make it work and to guide it back to a more physical and loving physical relationship. Since that is what she wants - and I have to accept that SHE is the expert when it comes to her! - I must say that for me, the way I got there was by taking care of myself. And I remember vividly being told by my therapist that if I ended up alone, or reunited with my wife, the path was the same - self-care.

Self-care in not mutually exclusive with caring for others (like a mate) but it is the starting point IMHO. From what she said, it sounds to me like Chichibug is acutely aware of this, and is doing a lot to make herself as happy and healthy as possible (which is why I found Rico's post so offensive in its' assumptions about her). I just want to endorse that viewpoint of self-care and to let her know that the paths we walk can be hard and sad at times, but with persistence, and luck, we can sometimes get what we want. So I hope for her that talking frankly to him about what it will require for her to be happy in the marriage gets his attention and that his response is as loving as it ought to be.

Tim
52, Peyronies Disease for 30 years, upward curve and some new lesions.

Chichibug

Hello All,
Well, after being away from the board for awhile, I gathered up my courage to return just to say that I appreciate all of the feedback here.  I didn't mean to create such a firestorm, and didn't mean to polarize anyone or create any controversy.

I just wanted some facts about how men feel with this.  Physically and Emotionally.  Reasons why a guy would keep someone he loves so far away.  I don't know much about Peyronies, and a lot of what is written here is over my head.  I was hoping to get some real-life perspectives.  I did get some, and I appreciate your honesty. 

I won't ever leave this man.  He is everything to me.  I didn't mean to make this all about sex--it's not about 'sex'.  It's about any form of intimacy at all.  I was wondering if other men had suffered this way, and if so, how did you deal with it?
It's about me understanding how this feels--does it hurt, and if so--how, when, where, and how long? 

My details of my relationship were to provide some background, and to hopefully show you that I LOVE my husband and want nothing more than the best for him.  If the best means that he has to stay distant, then so be it.  It's not a deal breaker for me.  (not for financial reasons, either--but because I LOVE him.)

Yes, I knew that there was something called Peyronies when we were engaged.  It was VERY slight, and didn't pose a problem physically with him.  I had no idea that it would progress.  So to say that I knew what I was 'getting into' isn't true.  I wasn't privy to that information.  Like I said, it wouldn't have been a deal breaker, and isn't a deal breaker, so that's not the point.  I was just looking for information. 

I have heard that some of you have found healing through various means--this is the sort of information I have been seeking.  Personal stories, and ideas on how to overcome obstacles are very helpful.

Christine is right--unless you've been rejected for years without discussion, you don't understand how it feels.  I will gladly deal with this rejection if I know it's this or not have him around.  Like I have said again and again, I LOVE him.  ALL of him.

Thanks again,
Chichibug

Hawk

Welcome back!


You asked an honest question.  We answered.  There is no need for you to apologize or express regret.  We are big boys and can endure some difference of opinion and controversy between us.  We almost always manage to do so without personal attacks or giving or taking offense.  Some of us simply did not agree or approve of the defensive, blaming, nature of a post.  Knowing the individual, it took us by surprise.

I do wish you would read the entire "Psychological Aspects" topic.  There are some great posts in there that will help you to get inside on the the head of a man with Peyronies Disease.  You will see different perspectives.  We do not all react the same.  I think I could have my penis amputated, and in between bouts of depression and anger, I would still dive into whatever sexually intimate activity I thought my mate was sincerely interested in.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
[url=http://www.peyroniesforum.net/index.php/topic,872.0.html]Hawk - Updated 10/27/18 - Peyronies Society Forums[/url]

Tim468

Hi Chichibug,

Welcome back!

The firestorm here was over a strange response that tried to blame you for what he was doing.

None of us can easily climb into the head of another and say what is "best" for them. for me, if I was involved with a person who refused to be intimate (I don't mean just physically), that would be a deal buster. For me, that would be the one thing that I could not tolerate living without. So it is interesting to hear someone say that would not end it for them. It sure would for me!

Since that is so, it is difficult for me to figure out how I would act if I were in your shoes. What I do know is that ultimatums are not the same as requests. Expressions of needs and desires are where I start. But for me, a marriage means a partnership. For me, that does not mean a one way street in terms of giving. If I felt I was giving but not receiving intimacy, then I would ask my partner if she really desired to be married to me - if she was unhappy or wanted a form of intimacy that met her needs better than I could do. I would see no point in forging ahead if my partners needs were not being met.

I say this because I believe that expressing our inner self is an important part of being alive. If a man cannot express himself, he is guaranteeing unhappiness in his life. Unfortunately, that means that for many men in marriages they are unhappy, and particularly blind as to WHY. Women are often culturally used to responding to men and taking direction from them; men are not and need to learn (often) to be influenced by their wives. But if that is not a two way street, unhappiness is to be your lot in life. I am uncertain what would make you want to stay in that situation, or why that would promote a feeling of "love". But if love is a warm feeling of closeness and intimacy, it doesn't actually sound like you have that.

A terrific link to one of the better people for getting this stuff is at the Gottman institute  - http://www.gottman.com/ . My favorite link is to the relationship quiz - http://www.gottman.com/marriage/relationship_quiz/

and his test for how we make what they call "bids for connection".  - http://www.gottman.com/marriage/relationship_quiz/quiz2/


Maybe something at this site can help you and eventually help the both of you. I will pray for that for you two, because it sounds like you have a solid foundation of affection and respect that could help you rebuild your intimacy.

Tim
52, Peyronies Disease for 30 years, upward curve and some new lesions.

Gator

I received the following message. The sender is a new member and is having trouble posting. Perhaps someone here could respond.

I feel really stupid, but I can't seem to navigate my way through the system to post a comment on the forum Undecided.    Not sure what my problem is.  But here is my question as I think I might need a guys perspective on:

My boyfriend and I have been together almost two years.  We have been sexually active for a little over a year now.  Neither of us have ever been with anyone else nor do we plan to as we hope to get married several years down the road.  I do not ever recall a time were intercourse has not been painful for me or at times uncomfortable for him.  When erect, his penis has a downward bend.  The bend is quite severe, were even the missionary position is impossible unless I elevate my lower half really high up so that he can get in.  And it is is still painful.  We seem to have difficulty with many positions even though he wants to try different things.  It is either painful for me or he falls out.,etc. (sorry I hope this isn't too much information)  Recently I asked him "Why does it bend like that"  he said that he didn't know but it had always been like that.  I started looking on line to find out what might be "wrong" with us.  I came across Peyronies Disease and Congenital Curvature which I think he might have.  How do I bring up the subject and tell him that I think we might have an "issue" without hurting him.  I don't want to hurt him, but I think we need to talk about it.  I am so worried that I am going to say the wrong thing. Can you please advise me?  Perhaps you can throw this question out there for me and tell me what might be the best way for me to handle this.  Thank you so much.

Sorry, I feel like an idiot, I am sure posting is easy, I'm just not catching on to quickly haha!!

Thanks

Liam

First thing, unless you are being intentionally rude and vulgar (which I doubt you have ever been), you can describe whatever you need to without feeling like you're offending anyone.

I am assuming this is to make things better for you in your life together, not a factor of whether you stay together or not.  Because if it is the latter, no surgery or treatment will fix that.  That relationship will fail, regardless.  But, the fact you went to the trouble to post here makes me sure its the first.

There are some cases of the penis becoming smaller (length and girth) as well as other complications related to corrective surgery :(.  Make sure you can live with this before you broach the subject. 

If you are sure, ask if he has seen a doctor about it.  Approach the subject as making the physical act better.  Try to separate physical from emotional.  In other words, let him know whether or not he does anything, you still want to spend your life with him.  Put it out there and let him talk.  Men like to fix problems (I do).  Maybe he'll take the ball and run with it. 

Its not an "issue".  Its a chance to make things better.  ;)

Again (please remember I don't know how you feel) if you can't live with him just as he is, don't say anything.  Just end it.  But, if you love him and are committed to the relationship, do not hesitate to discuss it with him.

Joanie just posted in the Surgery topic.  You can ask her questions about plication.

Good Luck,
Liam

Surgery study pdf file:   http://www.blackwell-synergy.com/doi/pdf/10.1046/j.1464-410X.1997.02988.x

"I don't ask why patients lie, I just assume they all do."
House

Hawk

Gator,

Thanks for assisting this member.  My first concern is with this member being isolated because she is having trouble posting.  Please PM me or have her pm me so Christine or I can help her post.  She needs the support that can only come by feeling free to participate both here and in the Ladies Room.  This link may help her http://www.peyroniesforum.net/index.php/topic,316.0.html

Hawk

To the Lady: I agree with all that Liam said and want to reemphasize that first you have to be sure if the current condition or any worsening side effect from surgery is a deal-breaker for you.  If you are sure you are with him regardless, then you can encourage action.  Obviously you cannot pressure him to do it to keep the relationship or encourage him to do something then leave if it goes bad.  I get the impression that is not an issue for you.

I would ask him,
QuoteDo you feel frustrated because we cannot not make certain things work the way you would like them to?

If he says yes then tell him you to want him to experience the things he desires and that you are excited to help him in anyway possible.  See if he clearly identifies the  problem as being the curve.  If so ask him has he ever researched a solution.  I think it will soon become obvious if he is interested in this or if he is content.  If he is content with the current condition then you have a problem that requires precision communication skills on your part.  I suspect he will respond positively however.  When he does you can offer to help him research on the internet etc.  You could direct him here or simply report back if he wants  to avoid the forum.

Also, if at any point you feel you have revealed more than he is comfortable with on the forum, contact Liam, Christine, or me and we will fix that and anyother forum problem you may have.

Hope to hear back from you. 
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
[url=http://www.peyroniesforum.net/index.php/topic,872.0.html]Hawk - Updated 10/27/18 - Peyronies Society Forums[/url]

lynn

Thank you for your response.   No I will never leave him  :o !!!  I love everything about him and us.  I want him to know we are in this together.     I hope you didn't mis-interpret me, our intimate relationship is wonderful in many many other aspects its just when it comes to actual  intercourse it can be a bit uncomfortable and then becomes a bit awkward.  I just don't want to hurt him, that would not be my intention so I have been apprehensive about talking to him about it. We are both young and I want to go about it the right way.  Its just hard telling him that I think there might be something different ( I hesitate to say the word wrong) and that I think he should speak to a DR.  Which I think will be hard for him to do in the first place let alone that fact that we are young and 20 & 21 years old.   Whatever his decision, I will support him.  I have read about the surgical options and how it could effect his size and I would never ask him to do that especially not for me.  Whatever his decision, I will support him.  I just want to make him aware of it and then go from there.  Thank you for your help.

lynn

Hawk,

Saw your message, I think if I stay on this page and keep replying this will work.  I think I am doing this right now??
I would like it to be so much better for him.  I mean he reaches orgasm but it just seems hard on him.  He is always asking if I am ok, is he hurting me etc.  I will definetly take your advice and see if feels that the curve is our problem.  I do want it to be the best it can be for him.  In the meantime till I get up the courage to talk to him about it I will try to find a position that we are both most comfortable with. 

I have recently read something about Du????? Something that is on the right hand that goes with Peyronies Disease?  Does this make any sense to you?  What is this and is it something I can look out for?  Thanks


Christine

Lynn,   it sounds to me that you are your BF is very lucky to have such a caring and resourceful gal in yourself.  Communication is the key with dealing with situations such as this and your love for him will show in that.  Perhaps when you start talking about it, you could share with him that you have been doing some research and have found a site that may be able to offer some suggestions, options, and even some answers that he may have always had but have been apprehensive about bringing up to anyone.  The beauty of this kind of venue is that he can get the answers that he may be seeking and still keep his anonymity thus lessening any embarrassment.

I am so glad you are here and I do encourage you to share in the Ladies Room as well.   I am sure that your steadfastness will be a blessing.

Christine
May the Lord Bless you  :)

Liam

QuoteHe is always asking if I am ok, is he hurting me etc.

I'd bet he would be relieved for you to discuss it with him.  He knows and he know you know and you know he knows, now.  ;) So go for it.  :)

The other condition you mentioned is Dupuytren's Contracture (Disease, Condition).  It can be in either hand.
http://en.wikipedia.org/wiki/Dupuytren's_contracture

There are several other fibrotic conditions related to Peyronies Disease.  However, a congenital (since birth) curve is only related to Peyronies Disease in that they both cause a bent penis.  Congenital curves are not necessarily fibrotic.   :)
"I don't ask why patients lie, I just assume they all do."
House

Gator

Lynn,

This is a very helpful site for you and your lover.

hope you get some insight and informative information that you can share with your partner.

Best of luck,

Gator

turquoise

I have recently been doing research on Peyronie's Disease and related topics because of my husband's penis downward curvature almost like a banana. We are both fairly young - mid-twenties- newlyweds and have not been able to have penetration sex since we began trying. It is so painful for me that we cannot even fully penetrate. Does this happen to other wife/girlfriends? I am just not completely sure if the pain is a result of his curvature or if it is that I have a problem also. He is looking into surgery (losing size do to surgery isn't a big deal to us because he is large as it is), and this issue has brought us closer in our relationship...I just want to know if anyone else gets this sort of terrible pain trying to penetrate. Thanks!

Old Man

turquoise:

Look for a PM from me as soon as you read this.

Old Man
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

Tim468

Dear Turquoise,

Hard to answer this one - but before you and your husband consider surgery at all, it may be of great help to see a good physician accomplished in the realm of sexual medicine. Problems that have gotten in the way of successful intercourse include poor positioning, poor lubrication and poor timing. Working on this with the help of someone who can talk to you both very frankly is worth the effort, potential embarrassment or cost. I would NEVER let someone operate on me until I knew that all non-surgical options had been explored completely.

I would also be able to discuss this more in PM's if any of it is too hard to talk about here. If it is not too hard, remember that which we learn how to mention, we can learn how to manage. Plus another couple may come here and read it and be helped.

Tim
52, Peyronies Disease for 30 years, upward curve and some new lesions.

maddie

Hello all, I'm 27, my partner is 28 and has been told the bend in his penis is in fact peyronie's disease. We have been together for 3 years and have had a fairly decent sex life up until now. When I suggest we try intercourse to see if he can penetrate or not he doesn't want to. He says it doesn't hurt him so I can't understand why he won't attempt to penetrate. It's been months now since we last had sex and I'm not a selfish person at all but I'm starting to feel like i'm losing that sexual connection between us, the spark is going away as i keep getting shut down by him.

Am I being selfish? I don't know. This effects me as well and he doesn't seem to be taking that into account. All he see's is that I'm being needy and trying to make him feel bad about it.

I won't ever leave him for this physical problem he has, but I also can't live my life (at 27 years old) with a completely sex-less lifestyle. I very much enjoy sex, and that was one of the many things that attracted him to me.. But now I feel like it's never gonna happen anymore, and this frightens me.

Anyone else getting this?

Tim468

Hi Maddie,

It happens all the time, unfortunately. I wrote something that might be helpful to you.

http://www.peyroniessociety.org/intimacy.htm

In general, I can't tell you what to do - I wish I could. But I do advise you to hang in there and to encourage him to understand that you love HIM, not just his penis in a certain shape or function. Often, this takes time, and some men never get it - they remain balled up in so much pain that they cannot see beyond their own fog of pain and hurt.

In general, I would suggest empathy and demonstration to him that you respect his struggle. You might be able to get him to engage in therapy with you - if not, go yourself. For now, it sounds like you have become somewhat invisible to him. This is not about not loving you. It is about sadness that he can't love you the way he wants to or that he thinks you desire. Letting him know that you miss rough and tumble sex as well, but that you do like slow and careful sex a lot too, can remind him that there are  ways he can love you.

Hang in there.

Tim
52, Peyronies Disease for 30 years, upward curve and some new lesions.

Steve

Hi Maddie,

While being a guy, I can't exactly know how you're feeling, but I can at least give you this guy's opinion of what your husband's going through...
The loss or perceived loss of being able to have sex is an extremely scary thing to us guys (from first hand experience).  It makes us turn inward and not consider as deeply the effect we have on those who love us.
On top of that, your offer to "see if he can penetrate or not " might be scary from his point of view.  His fear is that he will not be able to penetrate, which will just confirm his worst fear that he'll never have sex again EVER!  On top of that, he fears that if he can't penetrate, that he'll lose you to someone who can!  In his mind, as long as he can put off that certainty (in his mind), the better.

The key word in all the above is fear!  Anything you can do to calm his fears will go a long way to bring you two back together.  My suggestion is to focus initially on just cuddling to instill in his mind that you do still love him.  As he gets comfortable, you can move to more foreplay, and even some oral if either of you are into that.  When the time is right, don't ask him to try and have sex, just tell him "lets have sex".  Anything you can do to take the 'pressure' off him to 'see if it works' I think would help.

These are just the opinions of one guy who'se gone through a lot of those same feelings and fears.

Good Luck Maddie, and always stay in love.

Steve
Topical Verapamil,
12 Verapamil shots (ouch!),
Now VED - Too many Weeks,
Still 70 Degrees :(

jackp

Hello Maddie,
As a over 12 year veteran of Peronies with a loving wife mind if I give you a few tips that worked for US.
1. Stop the pressure to penetrate. It only makes matters wosrse, the more pressure the less responce.
2. An older counselor taught me a trick when the wife was having problems just after going through menopause. Give him at least 2 orgasms with penetration before trying penetration again. The way you give him orgasms does not matter the fact that you lovingly do it is.
Remember the old TV show where the waitress always told them to "KISS MY GRITS". The fun part is finding the GRITS. It is different for everyone.
3. Get him to a good urologist. The side and after effects of Peronies can be as bad or wosrse than the onset. With proper treatment he may be lucky like myself and the curve correct in 12-18 months.
4. Look at Old Mans VED 26 week program. You may be supprised at how well it works. The secret is slowly and keep the pressure to a minimun. You can over do the VED and cause problems. I did and thanks to Old Man I do not hurt myself anymore and has help regain some size.
Good Luck to you and the hubby. There is a ton of information here. Someone always willing to help.
Jackp
[url=http://www.peyroniesforum.net/index.php/topic,890.0.html]My History[/url]

Old Man

Maddie:

WOW is my first impression of your post! After reading it all the way through and reading the previous posts, I thought it necessary for me add my 2 cents to their suggestions.

I am called the Old Man on the forum because I am just that - old and getting older at 78 plus. My Peyronies Disease appeared at age 24 when a real good sexual encounter went terribly bad. My penis was literally broken and Peyronies Disease developed very suddenly. Won't go into all the details of treatments and/or therapy that have gone under the bridge of life since then but they have been many and varied.

I will state that I am very familiar with the situation that your partner finds himself in at the moment. What your guys do in the next few weeks will set the stage for your relations in the future. Both of you must "bite the bullet", realize that maybe conventional sex is not available, but as it was said in an earlier post, there are many other ways of having real good enjoyable sex if you are into doing them or can start doing them. I know first hand that putting off some form of treatment or therapy can and will devastate your relationship.

My history has been posted earlier on this forum and it covers over 50 years now of having Peyronies Disease symptoms. However, as it has been mentioned the VED therapy did the job for me. Today, I am virtually free of any Peyronies Disease symptoms and sexual relations with my wife of 45 years is just an enjoyable as it ever was.

So, try to get your partner to realize that this is not the end of the world, but just another bump in the road of life that you and him together should overcome. I will be glad to help in any way, private messages and /or any other means that would provide help for you guys.

Sincerely, Old Man
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

maddie

Thank you very much Tim, steve, Jack and "old man"! I really do appreciate a man's point of view here and will certainly take your advise and go foward from here. He has gone away for 10 days on business now so I will take this time to myself and will really look forward to his return. I totally understand how scarry this must be for him, I too would be frightened to death if something similar happened to me. I do love him dearly, all of him and will continue to forever.. Peyronie's or not. I am going to get him involved in this forum upon his arrival. I only just discovered it online today myself, and from what i've already read I think he too would be very interested to get involved.
I really appreciate your replies.

Your Truly,
Maddie

Old Man

Maddie:

We all are here to help in any way possible. So, feel free to call upon us at any time. Ask any and all questions that may come to mind. If we don't know the answer, will try our best to get one for you.

Hang in there and let him know that both of you have our support.

Old Man
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

Hawk

Tim, I fixed the link on your post and routed it to the webpage you developed on that topic.  I am not sure where else you may have been directing the link or if we need it somewhere else as well.

I suggest that all follow Tim's link if you have missed reading this write-up on intimacy and Peyronies Disease.

It is easy to follow the link to the our website and pop right back over to the forum.

Again, the link is http://www.peyroniessociety.org/intimacy.htm
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
[url=http://www.peyroniesforum.net/index.php/topic,872.0.html]Hawk - Updated 10/27/18 - Peyronies Society Forums[/url]

Aldar

I have seen several posts where women who are in a long-term committed relationship come to terms with and support their man's Peyronie's problem. I was wondering how do women that men just meet react? After all, women in new relationships do not yet have the emotional commitment and intimate non-sexual knowledge of the man they are dating, whereas married women or those in long-term relationships do. I know a common answer would be that if they really love or like you, the physical wont be as important as the emotional, but I'm talking about women/relationships that have not yet reached that point.

So what have been some of your experiences with new women in your life after the relationship becomes sexual and they find out about the Peyronie's ? Comments from both men and woman would be appreciated.

-Adam

Tim468

I was nervous. I was also turned on as hell. So when I got hard, I felt better than if that had not happened!

Of course, soft, I look normal...

So for me, several things probably made it easier emotionally.

First, despite my desire to do so, I did not go to bed with her right away. That helped; we had more of an emotional connection at the outset. (I did sleep with a woman I went home with from a party. She was tipsy, if not flat out drunk. Things went fast. My curve is upwards and could be seen as within the realm of "normal" (ie no right angle turns). With her, the fact that we were drinking made it easier - but not better for us in the long run). So in general, I would advise going slowly.

Second, we had spent some time making out and not having sex. So the buildup by the night in question was pretty intense.

Third, being unsure if we were making a good choice, we took a long time and so by the time we went to bed, it was late. We did not go to bed in the middle of the afternoon. So, in the dark, it is harder to get the visual, and the differences (even the dents and angulations that we obsess about) are not as obvious to others as they are to us. At least, they are not as obvious as "abnormal" to others.

Interestingly, even though I have developed some new dents of which I am very aware, she still says it "doesn't seem any different". So partly, our own fascination with our own penises makes us forget that they may not see it as looking weird even.

If I had a much more angulated penis, and/or if I had major Erectile Dysfunction, I would have to talk about it first. I would say that I had something that was hard for me to talk about, and important to me ,that I wanted to tell her. Then I would say that I had developed a problem that led to a change in how my penis got erect. It no longer looked the same, and/or it was harder to get hard. I would say the truth.

Young men worried about this might be amazed to find that telling the truth works very well!

Tim
52, Peyronies Disease for 30 years, upward curve and some new lesions.

sunny12

I just wanted to respond to Aldars question about how "new women" react to me with Peyronies...

I can recall my encounter with my current boyfriend when I first discovered he had peyronies.  At the time of intercourse, we had been dating, not in an official relationship and had yet to be intimate with one another. 

I, age 20 had been dating my current boyfriend, age 19 when we met in college this past year.  After going out on several dates and getting to know one another on a more personal level it was becoming inevitable that things might become physical.  At the time, I had no idea about his condition, yet looking back on the situation, he had dropped several hints.  I can recall him texting me after making out one night and telling me "theres something unique about me I think your going to find out soon." Clueless about the situation, I figured he was just alluding to the idea of him being 'larger than normal', being a common statement for boasting amongst college boys.  Playing along (so I thought) I urged him to let me in on his little secret, yet he persistently stated that I would find out on my own.  This confused me, but I thought nothing of it.

Fast-forwarding to 'the big night' I remember as we became closer to having sex, he became somewhat nervous.  I am not sure if the nervousness was due to possible embarassment or simply the fact that it was our first time being intimate with one another.  Perhaps it was a combination of both.  As the moment drew near, he lost his erection and became extremely apologetic and nervous.  At this time, however, I had NOT noticed 'his uniqueness' at all, I was simply excited to just be with him.  Assuming he was just nervous about being with me, I assured him that everything was fine-it was just nerves, and I was very excited to finally have sex with him.  After a few minutes of relaxation, he re-gained his erection and we proceeded to have intercourse. 

I did not notice any differences at the time, though his situation is far from average (he curves left and upwards).  I had honestly not noticed anything abnormal or different. However, I found sex to be more satisfying than that of my previous relationships, oddly enough. 

A few days later he brought up the text message that had confused me, by telling me that 'there was something unusual about him.'  I am not sure if this was awkward for him, but he opened the discussion quickly by typing 'Peyronies disease' in the search box online and simply stating that his penis was differently shaped.  Not knowing how to react, I didn't really comment to the situation.  Yet later I went and did some research on my own. 

At this point, we have been in a relationship for a couple months and enjoy a wonderful sex life.  For some reason, however, my boyfriend doesn't really open discussion about his situation.  Rather, he makes jokes about it or doesn't seem to be bothered by it at all.  I remember him saying once; "Its alot like college courses, the bigger the curve, the better." The one time we did discussed it, the only information he relayed to me was that sometimes its hard to take off a condom, his skin gets dry on one side, and that his previous girlfriend enjoyed their sex life also.  Personally, I haven't had any real challanges with the situation, other than some pain when in certain positions and it being tricky to achieve penetration sometimes. We try to make these instances positive, by using them as an incentitive to try new things or open lines of communication.  I think its great that he has a positive outlook on the situation, and after being in a relationship, I fully support him.

The only challanges I have personally found, are simply physical, not emotional.  I feel very fortunate for his and my own sake that he does not deal with serious emotional reprocussions because of his situation, and I applaud those who are dealing with the ongoing difficulties and challanges presented to them.  It was my intention to be only respectful in the submission of this comment, and I hope that anything I have said may only be constructive and helps.