Worried about my husband...

[GS]

When I first got Peyronies, my fiancee didn't know what to think about it and I was scared to death.  After doing a little research on the internet, it was pretty obvious what I had.  My urologist suggested vitamin E and not having anymore sex until the pain was gone.

I was open with her from the beginning and we have continued our relationship in spite of Peyronies Disease.  It can be done and we are in our third year of living with it.

I'm not saying it is easy and it will take effort from both of you to make it work.  Feel free to send me a private message if you would like to discuss it in detail.

GS

[leonard7858]

Honestly, I didn't know where to start here...I need some advice, terribly. It seems this was the best place to start.  I will try to make a long story short.  8 months ago, after years and years of being single, I'm met the love of my life, our feelings are mutual.  Our sex life in the beginning was crazy and fun, then one night 4 months into our relationship he told me he had been diagnosed with some disease that started with a "P", and that the doc said if he takes vitamin E, he would be fine.  He seemed so unconcerned about it, I didn't give it much thought.  Well about a month ago, our 5 nights a week of seeing each other, (not always sex..mind you) dwindled (where's the spell check on here?  ) to the weekends.  Although we are in contact all day long....We boat, we ride his bike, we have a blast, but suddenly I felt he wasn't attracked to me anymore, sexually.  Then a week ago that conversation came back to me, and I started thinking about some moments during sex, what an idiot I am!  So I started to google and found what he was talking about!  Here's my dilemma...he's a very PROUD man, I feel he is pulling back because he is concerned about making me happy.. I just want to be there for him, I love him very much. But I don't know how to approach him to let him know I don't care about this issue. I almost confronted him and asked him if he wasn't attracked to me anymore (before the light bulb went off!)  thank goodness I didn't do that.   Because he is so proud, I am lost as to how to bring this up, that I am here for him, no matter what!  Sorry if this seems so stupid...I just want to support my man and can't lose him...any suggestions?  Thank you!

[MikeSmith]

I noticed the dents first, then it became curved and it started to worsen.  The dents were the first thing I noticed though.  He might be in an early phase where treatments like pentox & a VED (vacuum erection device) would help expand the plaque and stop the problem. A device called fastsize may also help.  Now might be the best time to intervene --  10% cases improve...40% stay the same, 40% get worse.  (roughly... I think my numbers are a little off but that's close).

[lwillisjr]

I echo Skjald's responses. Many of us don't know when or what caused the trauma to trigger our Peyronies. The main thing is to just be aware and keep track of any further changes. Many men are not aware of this "disease" until we got it ourselves.

Yes woman on top (or cowgirl) was one of our favorite positions as well. But the specialists will caution against it as it makes men more susceptible to trauma. i.e. if you move one way and he does another and slips..........

Also, has the pain you mentioned always been there, or is it recent. If your husband has always had occasional pain then this is likely not associated with any recent Peyronies disease.

Also... the "hanging to the left"...  if this is while flacid then is completely normal. Any curvature related to Peyronies is identified or measure while erect. And even at that many men have a slight curve (since birth) which is also normal.

You are wise for raising your own awareness and monitoring any further progression.

Les

[Worriedwife]

Thank you so much for your response! I am feeling encouraged because after reading alot of these posts, I do feel that this is the "early stages" or perhaps a mild case??? It seems the indenting is up towards the head of the penis, and like I said, he doesn't have any problems with erections or orgasm... he just noticed things seemed "different". I don't think the pain is bad, or often even~ but if getting on pentox is beneficial to avoid a worsening of symptoms etc than that's what we will do. My husband was really freaked out at first, but seems to now be feeling ok and positive that everything will be ok. We have very open communication and I tend to be the "researcher" and very diligent to get the best infomation so I really feel confident we will get thru this just fine....  My only fear is if things get alot worse and prevent us from having sex.... I just can't imagine how hard that would be on our relationship. I just know how important connecting sexually is in a marriage (more importantly for the man, more emotionally for the woman). I am contacting a local urologist referred off of a "Peyronie's disease" website... hopefully the dr will be educated, if not, we may be taking a trip to CA. (We are in WA)
It is hard not to feel responsible, but honestly~ it's not like we have CRAZY WILD sex.. I mean, I'm adventurous and passionate, but I would imagine that many more people would be dealing with this in this day and age. Anyways, thanks again for your response. It's nice to be able to talk to someone about it... it's not like I can talk to a girlfriend about it.

[Skjaldborg]

Worriedwife,

I got this disease at a young age as well (29) and having the support of my wonderful wife was one of the key things that has gotten me through this. Here are some things you might want to consider:

1. Many urologists do not have a thorough understanding of Peyronie's disease. You will probably need to get a referral to a male sexual health specialist urologist, such as Dr. Tom Lue in San Francisco or Dr. Laurence Levine in Chicago. These aren't the only two specialist, but many here on the forum have seen them. I went to Dr. Lue last year and it was a very positive experience.

2. Ask the urologist for a prescription for pentoxifylline. This is a medication that helps stop the inflammation that causes the formation of scar tissue and can help reduce the pain associated with the disease. Pentoxifylline has not been tested in large studies, but several prominent urologists have done limited studies on it. You can find two such studies here: http://www.peyroniesforum.net/index.php/topic,772.0.html  You should print these out and take them to the urologist.

I was on pentox for abut 8 months. It completely got rid of my pain although it did not reverse any physical changes. (My physical changes are relatively minor, fortunately).

3. This is not your fault AT ALL. But having said that, be cautious during sex until your husband has been to the urologist. Don't do anything that causes pain for your husband and use lots of lubrication. Many urologists will discourage girl on top due to the propensity for injury. It is important to note that getting erections is a GOOD THING and that your husband should not worry about having them. Good blood flow promotes healing. In fact, the urologist may prescribe low dose Cialis or viagra to maintain good erectile quality even if your husband does not have erectile dysfunction.

4. Have your husband come to the forum and learn all he can about the disease. Overcoming this disease will take the both of you working together. I know it's scary right now but things will improve as time passes by (it did for my wife and me). It's possible that your husband has a mild case that will result in nothing more than a few indentations and some unpleasant memories. Getting treatment early helps prevent inflammation and the formation of more scar tissue. It's this scar tissue that causes curvature and deformity (hourglassing) because the penile tissues do not expand properly. Proactive early treatment is very important.

I'm sorry you and your husband have to deal with this but this forum will provide ample information and support during this difficult time. Best of luck and feel free to ask questions any time.

-Skjaldborg

[Worriedwife]

I got back from a trip last night, and my husband voiced a concern about strange "indentations" on his erect penis. I, trying to assure him it was nothing, googled it and came upon "peyronies disease" and have not got us both concerned. He is 28, I'm 27- after researching it sounds like he may have the "hourglass" indentations. He's only noticed it very recently, he's also had occasional pain during an erection or orgasm... I never thought anything of it as he didn't act like it was crazy painful or seem concerned so I just thought that was "normal". We have never had any other sexual partners, so I have nothing to compare to. He's always had a slight curve, but again, thought it was normal "hanging a little to the left". You can't really see the indents by looking, but by feeling, and now that I read about the hard "plaque" he says he can feel something in there. He's never had any erectile disfunction, and never had any issues with orgasms, but again- I have nothing to compare it to... So not sure I would know if anything was "abnormal". I just feel so awful wondering if I was too rough at some point and caused this... I never knew anything like this could happen. Now I'm worried about hurting him more.... We are going to see a urologist... But in the meantime... Should we refrain, or just be gentle? Does "girl on top" position tend to cause this? Because that's one of our fav positions and I need to know if that, or anything else should be avoided. If this is just the first "phase" could his penis go on to get the curvature in addition to the hourglass indents, and does the hourglass tend to cause erectile disfunction down the road? I am just so fearful of the prospect of not being able to take care of my man... I know this has to be so much more scary for him- how can I support and encourage him thru this sensitive issue? Any advice is greatly appreciated. Thanks-