Hello all
I have been married to a lovely man for 22 years and we have been dealing with Peyronie's disease together for a year now. Because of the nature of the disease, he feels he can't share his situation with anyone except me and I totally understand and support him in that decision. However, it means I have no one to offload to....the last thing I want to do is put my pain on to his shoulders! I guess I just want to know I'm not the only person dealing with this and hope to make some friends here! Look forward to hearing from you.
Best wishes
Honey

Hello Honey,

Even if your husband is uncomfortable sharing, he is welcome to read about the treatments here. Has he been to a urologist yet? If not, I really encourage him to go. Treatments such as Pentox, VED and PRP injections have been shown to be helpful for many men on the forum. While Peyronie's has no cure, improvement is certainly possible.

Good luck to you both and feel free to ask and specific questions you may have.

-Skjaldborg

He should see a specialist and try VED therapy, pentox, and possibly cialis.
There is hope for the disease ! Don't let a regular urologist get him down, they know nothing compared to a specialist and may give you treatments or inspections that will make it worse.

Hi, Sorry to hear your husband doesn't want to talk to friends about his Peyronie's. It's my belief that talking about not-sex ie. erectile dysfunction, peyronies, fluctuating libido - is more of a taboo than discussing sex, and when it does crop up can be easily laughed about. I like to think I'm liberated, permissive etc. but have found it difficult to discuss with anyone but my partner and my best male friend. We need to chip away at our embarrassment and share this stuff! Good luck

Hi honey,

I was also recently diagnosed but am a lot younger than your husband (29). Because it's only been a year, a lot of the front-line treatments will probably still be very effective (Pentox, VED, low-dose cialis etc). I got shuttled between multiple urologists who had no idea what they were doing. I encourage you and your husband to find a specialist in your area, not just a general urologist. The hardest part for me was feeling like I was doing nothing, and that there was nothing I could do (this is what the urologists told me). That is absolutely not true. There is no cure, but plenty of members of this board have recovered much of their function and minimized curvature through a variety of treatments. Get your husband to try some treatments, it will make both of you feel like you're doing something to fight what's happening to him. At the same time, the worst symptoms, in my opinion, are psychological. This disease is absolutely devastating, especially if he has ED along with the curvature/deformity. The one common denominator I've seen from these boards among the people who have managed the psychological consequences the best are those that have loving, supportive partners. He is so lucky to have you.

One of the things I had my girlfriend do was read a lot of the posts on the psychological sub-forum here. I must warn you that some of them are not pleasant or fun to read, but I think that, taken as a whole, they represent the range of emotions that men who have this disease experience. They range from complete despair to a newfound sense of gratitude and everything in between. He may not even understand how he's feeling or be unable to articulate it to you (or himself); I know that has been the case at times with me. Reading those posts will help you understand what he's going through. There are of course worse diseases out there (this isn't fatal, after all, although I'll say that is little consolation most of the time), but I speak from experience when I say that the acute stage has been very hard on me. It's also been hard on my girlfriend as I'm sure it's been hard on you. Make sure to take care of yourself and seek out people you can talk to about this. Confidants make such a difference, and have let me talk out some of my feelings and anxieties so that when I bring them to my girlfriend we can work on them together in a constructive way. That, more than anything in my opinion, will help you help him.

I know that, for me, the support of my girlfriend, and her reassurance that this is something we'll deal with together, has made such a difference. You clearly love your husband or you wouldn't be here. Letting him know how much you care about him and how important your relationship with him is to you (all the time, even if it seems like overkill, even if you believe that he knows that already) will really help him in those darker moments. Good luck! And like others have said, read the boards on oral treatments and VED. When you go to the doctor, print out the most recent studies (links available on the relevant sub-forums), and do a lot of research so you can be a good advocate for yourself. I wasted a lot of time and money and was far too deferential to urologists who often knew nothing or recommended options that had no clinical evidence of effectiveness. From what I've read, this is a very common experience for people who get Peyronies Disease. The more you know about his Peyronies Disease (if it was the result of an injury or came on quickly, whether he's still in the acute stage, how much pain he's having, etc etc), and the more you know about the best cutting-edge treatments, the better you'll be able to make sure your husband is getting the right treatment. I hope you keep coming back to these boards, and, if your husband is okay with us, please share your progress with us. It will help others to hear your story, give the regular posters and opportunity to reach out and be supportive to you both, and it will add to the body of knowledge that we've been able to accumulate here.

honey

We have a ladies dedicated board also that is accessible to ladies only
To get access to the board, write a PM to Christine.
It will be good that your husband will start treatment as soon as he can. Have good chance to stop the advance of the disease and even reverse the symptoms if treated early.
I was proposing him to start with VED (carefully, to pump to a level that don't feel discomfort or pain), you can find more information regarding VED and our forum protocol here:
Vacuum Erection Devices (VEDs) for Peyronie's Disease - PDS - Peyronies Society Forums
and in addition to VED, Pentox, low dose Cialis and Ubiquinol

James

Hi Honey,

I'm a Newbie here as well, having only really known about my Peyronies Disease for about a few months, and probably it appeared about 3-6 months before that. Certainly something that before I looked into it had never heard of.
As far as being alone with this, I counted 41 pages of members from around the world in the member's section. That would be only people who are aware enough to be here. Imagine how many others who don't even know about this forum yet.
My wife and I are on this journey together, and she is incredibly supportive, as you seem to be.
There seems to be so many people at so many various stages of this condition, that anyone would seem to understand where you and your husband are.
Western males are notorious for not talking about their problems, particularly anything to do with their penises. All we're bombarded with is about size and virility. I'm in Australia, and have  lived in the UK, so I don't see much difference in male information exchange in either country. Having said that, how do you start this conversation with someone, "Oh by  the way, on the way to the market the other day..."
My search at the moment is to find a competent Urologist (no mean fete) and research, research, research.
My email is available here should you ever want to speak with my wife about this, or as the moderator mentioned, a women's section.
Good luck in your journey, and glad you're not letting this define your relationship.