Peyronies Society Forums

Erectile Dysfunction Forum - for all men with ED => General Discussion About Erectile Dysfunction => Topic started by: JayEss on June 14, 2013, 01:11:06 AM

Title: New here...I feel aweful.
Post by: JayEss on June 14, 2013, 01:11:06 AM
 :(  I feel badly because my husband has this condition and I really really miss his original penis. He can still get somewhat hard...enough for intercourse...but it falls out a lot and I really can't feel it that much anymore. There is no "slamming me" as he used to call it. I can tell that he tries sometimes but it's just not gonna happen. Obviously, as a Nurse, I know this isn't his fault and there's nothing he can do about it. No one is "at fault" here....it just is what it is. But I feel bad. I haven't talked to him about it because he is a very private guy and I know he is already self conscious about it. I don't want ot bring up MY issue and make him feel worse. It's not like talking about it is gonna make it better. It's not a problem we can "talk out" and work on and make better, ya know?  I love my husband very much and he is a wonderful caring lover. He tries to "take care of me" in other ways. He's a thoughful caring lover. Lots of kissing and oral and such...but I honestly DO miss his penis. I would never cheat on him EVER....I love him with every fiber of my being....and our love goes deeper than sex but I inda liked that part too. I'll be sad to have to accept that this is just the way it's going to be now. I will, of course, but it'll be a bummer. I have wondered if drugs like Viagra work in the case. Does anyone have any experience in this? And how to I broach that subject with him? He's such a great guy and the love of my life...this just kinda makes me sad. I need some help I guess in lots of areas. Emotionally and then also with ideas to maybe help the situation. I'm not into toys like dildo's or anything. That just feels like a big hunk of dry rubber being jammed into you. I want my husband.  :-(
Title: Re: New here...I feel aweful.
Post by: Skjaldborg on June 14, 2013, 08:20:17 PM
Hi JayEss,

I'm sorry you have to be here, but welcome to the forum. Just a couple of quick questions:

1. Has your husband been properly diagnosed with Peyronie's by a urologist? If not, he should seek out a urologist with experience treating Peyronie's and who is willing to prescribe a drug called Pentoxiphylline (trental). It is not a cure, but it is helpful in reducing pain and shrinking the scar tissue that causes deformity of the penis. I would also suggest a prescription for Cialis or Viagra. Both help with erections but have the bonus effect of restricting TGF-Beta, a protein involved in inflammation and the formation of scar tissue.

2. Have you discussed it with him at all? This is indeed a sensitive issue, but showing him that you are concerned about his health and your sexual relationship is an honest way to get the conversation started. He might be a bit nervous at first, but reassuring him that you love him and you want sex to continue to be great for both of you should help put him at ease.

Even if medication does not work, there are numerous options, including surgery, that may be available to you and your husband. You should definitely speak with a urologists to explore these option. There are also boards on this forum where men who have had surgery discuss their successes and challenges.

Bu the way, there is a Women's Only section of the forum that you are welcome to participate in. A moderator will likely contact you shortly and provide the details for access.

Good luck and feel free to ask questions any time.

-Skjaldborg
Title: Re: New here...I feel aweful.
Post by: Jonbinspain on June 15, 2013, 02:09:21 AM
Jayess;

As Skjaldborg has said, if he is willing to discuss this, the first step is to see a Urologist - one who specialises in treating this disease - believe it or not, many of them know very little about Peyronie's, or how to treat it effectively. If a diagnosis of Peyronie's is given, you can then move forward from there.

You don't mention if there is any curvature or deformity of his penis - that can in itself make intercourse very difficult. If this is minimal, then yes, Cialis or Viagra should give him the capacity to have sex.

I would suggest that you read ( or better still, get your husband to read as well)  everything you can on this site. It will give you a comprehensive insight into this disease. In my experience, there is more knowledge here that has been gained from collective experience than is possessed by many Urologists.

Unlike many other sites focusing on this disease, this one is not trying to sell you anything. It is a bunch of guys all in the same boat trying to help each other.
Title: Re: New here...I feel aweful.
Post by: jean claude on June 15, 2013, 07:35:55 PM
Hi there... I have passed this situation and still dealing with this ordeal. It is much better now, but my girlfriend was with me every step of the way. It is important for us men to have a loving partner by our side. I too had problems with ED. I have diabetes, and a main cause for ED and Peyronies is diabetes. Does your husband have it?, if not sure I would have a check up for it. Look up a great urologist, and if nessecary, be ready to pay for a private doctor, may cost more but in the end saves time and heartaches. With urologist see if he can detect any hard or squishy lumps .Ask uro to try first Viagra, or Cialis, probably needs a heart exam to have them prescribed, if these don't work, go to caverject injections if Peyronies is not present. I have tried them, and the injection itself is painless. If Peyronies is present avoid the injection. These are some just of the stages i took. Only with injections i achieved erections, but caused more damage to myself. The only course of action for me was surgery. It's now been almost 9 months since I have received semi rigid implants, and things are going great. I still have to take medication for diabetes and a prostrate problem I have, but as mentioned things are great. If I may also suggest, go to the urologist with your husband. My girlfriend came with me often, and I appreciated her support. All that I mentioned above are not methods of cure, but are the steps I have taken. My situation was bad around 3 years ago, with a bad uro, but found 2 really wonderful doctors, that have helped me, and the support of my girlfriend, who was with me trough trying times, for whom I will always be grateful. I can be reached privately if necessary.

Ciao

Jean Claude
Title: Re: New here...I feel aweful.
Post by: JayEss on June 18, 2013, 08:17:54 AM
We have seen a urologist and he has "officially" received the diagnosis. He was the one who actually noticed the lumps in his penis so I made the appointment to ensure that it wasn't cancer or something. We did a lot of research before we went and was already kind of figuring that it was Peyronies but then he confirmed it.

He doesn't have any curvature at all. It's just not as hard. It is possible for us to have sex though. We had sex last night as a matter of fact...but I can literally barely feel it. I can feel it some but it seems like he's working real hard and I'm barely getting anything. It's literally like what we always call a "porno boner"...where it's kinda just a little better than a chubby. Sorry for all the street slang but I don't know how better to describe it.

I wonder, for the men who are not so hard anymore, does it feel the same for you as before? I mean, is HE still getting as much pleasure from it?  It seems like if the blood flow is restricted then it would be less sensitive for you as well, right?

I know I need to talk to him about it but I just don't want to make him feel bad or self conscious.  What if we talk and even if he takes medication there is still no improvement? Then he knows that I'm not really at all satisfied with sex. That would suck, ya know? How do I bring something like this up even?  Just, "Hey...let's talk about your soft penis."  LOL  :-/  It's kind of hard to just bring up. (No pun intended...LOL)  But I'm thinking about it a lot so I know I hafta do something.  Ugh  I love my husband very much and I know he is a VERY private man...especially when it somes to his privates...so I don't wanna bring up anything that will make him upset. I am a Nurse and am pretty much OK with talking about anything and everything is some uber degree of details...LOL  (Like Nurses typically do)  but my husband is NOT the same way. 

Ugh..I hope I can figure it out. Thanks for your help.   :(
Title: Re: New here...I feel aweful.
Post by: Norm on June 18, 2013, 01:26:06 PM
I would strongly advise you to get him on daily Cialis. It helps with blood flow to the penis, which is the root of the problem. It has the potential to really help with the rigidity. If it works for him, as it did for me and others, getting hard wont be the problem.
Has anyone suggested you get on the Ladies Only forum? I'm sure they can help direct you on how to approach him.
Title: Re: New here...I feel aweful.
Post by: JayEss on June 18, 2013, 01:42:43 PM
One person did...and I will...but I also like to hear opinions from the mans side of things. Not just women. I am curious how and if your significant others approached you about it and how you felt emotionally about the idea that maybe you weren't satifying them. And how you dealth with it and how are things now. If I only talk to woen then I don't get the other perspective.
Title: Re: New here...I feel aweful.
Post by: james1947 on June 19, 2013, 03:23:38 PM
JayEss

I would like to say a few things, from my experience but first, your husband have to try out Cialis as Norm wrote, also Viagra & Levitra to see the effect on his ED and side effects.
Quote...does it feel the same for you as before?...
NO, is not. Not for me not and not for my wife. Not enough hard and also the size is much smaller than before Peyronies. I can satisfy her just with oral so I will make an implant when I will be able to finance it. For now I am on oral treatment and VED.
Quote...but I can literally barely feel it.
That what my wife is saying.
QuoteWhat if we talk and even if he takes medication there is still no improvement?
In my opinion you need to talk with him and if the oral and injections treatments are not helping, you have always as a LAST RESORT the option for an implant.
QuoteHow do I bring something like this up even?  Just, "Hey...let's talk about your soft penis."
I don't know how long time you are together and the relations between you two. But yes, it may be "...let's talk about your soft penis to see what we can do about it".
QuoteI don't wanna bring up anything that will make him upset.
My private opinion, if you will not bring up the subject, your relations will end one day. How long you will keep for yourself that you are not satisfied?

I know you was preferring not to be here and sorry for the somehow strait answers.
Welcome to the forum
James

Title: Re: New here...I feel aweful.
Post by: Norm on June 19, 2013, 06:15:10 PM
Jay,
I did not mean to imply you should not be here. You are most welcome. I just wanted to be sure you got included in the ladies forum for even more support.
Now to the question. It is NOT like it was before. I would give anything to go back in time and stop this from happening. It does not feel the same. It is not as satisfying. But it beats nothing until I can improve. I agree with everything James said. Take it to heart. Make him talk about it. Assure him. You have no idea how his ego as a man has taken a hit. In our feeble little pea sized brains, we think a penis defines us as a man. If it is not working properly, our manhood is impugned. My wife has been understanding about it. She even says it is not important. I know better. It is important to us both. I suggest you make this a project you can work on together. Make him read and study with you. Encourage him to pump or use traction, or take pills. Whatever choice you make after reading. Btw, if you haven't, read the Must Read document. It is chock full of knowledge. Good luck.
Title: Re: New here...I feel aweful.
Post by: JayEss on June 20, 2013, 07:53:15 AM
Thank you James and Norm....I totally appreciate your straight talk. That's how i talk as well so that's what I appreciate. No punches pulled.  ;-)

We DID finally talk about it last night. I just brought it up. I explained that I had been sitting on it for a while now (no pun intended...LOL)  because I knew what a sensitive subject it was and I didn't want to hurt his feelings...but I felt like we needed to talk because I wasn't happy with the current situation and I didn't want to just go through life dealing with "good enough" especially if there are treatments out there that can help. Why would we not take advantage of them.

Of course, it was a bit of a blow to his ego. He thought things were still "OK" for me. He says it still feels the same for him as far as sensitivity goes and apparently he's measured it and he's only lost about a quarter inch...but I don't know...seems like more to me. Maybe just because it's softer overall. We also talked about how we're in kind of a "rut" sexually as well so we'll hafta work on that too. With the kids being older and staying up later it's harder to do anything because, by the time they go to bed, we're tired and thinking about what time we hafta get up in the morning, ya know? but it's hard to put an 18 year old to bed at 9:30pm...LOL  And my other son is 13 so he stays up until 10 as well in the summer. Apparently sex has become "prescribed" as he called it. "We go to bed..we do this...we do that...we do this...we do that...we finish and we go to sleep"  :-(  This made me kind of sad. I don't want to be the boring wife. So...we're gonna work on changing things up a bit.

He did, however, agree to trying some Cialis or Viagra. He's just worried about dependance. he said he's read that the more you take it the more you NEED it. Do you guys find this to be true? But it's not like the condition is going to spontaneiously resolve, right? It usually only progresses, right? And, of course, there's always the concern about the potential for a 4 hour boner. LOL  But, I'm gonna call the urologist this morning and see what we can do. Thank for your help guys.
Title: Re: New here...I feel aweful.
Post by: Norm on June 20, 2013, 09:04:19 AM
I've not heard anyone mention dependence on ED meds. And besides, as long as it improved my condition, I wouldn't care if I was dependent or not. I take Cialis Daily, but I don't take it daily. I space them out about 4 per week. That is enough to make my penis hang fuller, it makes erections firmer, and I have nocturnal erections every night. These are all good things. It can't hurt him to try. There is little downside and lots of upside to it. As to the four hour erection, I'm not calling my doctor, I'm calling Channel 7 News! You are correct that this condition does not go away. And yes, it progresses til it reaches its end point, then just stays that way. Most docs are going to tell him that surgery is the only remedy. It is not. There are graphic videos of the plication surgery on YouTube. If you watch them, you will want to persuade your man to try everything else first.
Lastly, you have not mentioned age here, but by the age of children, I can guess he is old enough he ought to get his testosterone checked. There seems to be a connection between Peyronies Disease and low T. Nothing says one causes the other, but a lot of us here find out that we do, indeed, also have low T.
Title: Re: New here...I feel aweful.
Post by: Skjaldborg on June 20, 2013, 11:13:41 AM
Cialis and viagra also have some anti-fibrotic (anti-scar tissue) benefits, so taking it for a long period of time would not necessarily be harmful.

-Skjald
Title: Re: New here...I feel aweful.
Post by: LWillisjr on June 26, 2013, 07:57:35 PM
JayEss,

I just added access to the Ladies Room to your ID. You are more than welcome to post anywhere on the forum.