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Author Topic: Women Speak Out about Peyronie's Disease  (Read 133371 times)

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Angus

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Sunny12
« Reply #200 on: April 21, 2008, 06:09:50 PM »

Thanks for posting, Sunny12. That is an easy to understand, well written post with thoughts that echo posts by other women in this thread. I wish your post and others like it in this thread were required reading for men who are newcomers to the board, and some of us old timers should read it as a refresher course on objectivity with this disease. It is posts like yours that help men keep a perspective on this condition, and that we sometimes worry about things that don't really deserve all that worry energy being expended on it. I hope your boyfriend is active on our board (or will become so), and I'm glad to see you here sharing your thoughts. And........ welcome!
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Tim468

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Re: Women Speak Out about Peyronie's Disease
« Reply #201 on: April 22, 2008, 06:59:11 PM »

Sunny,

I agree with Angus. Such a clear and level headed post might do a lot to reassure a man who was afraid of intimacy.

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

maddie

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Re: Women Speak Out about Peyronie's Disease
« Reply #202 on: May 16, 2008, 11:13:52 AM »

Hello again everyone. Sometime ago i spoke out about my partner recently finding out his peyronie's disease. He has woken up with errections and has complained of pain. So painful that he has stopped all intimacy between us cause he doesn't want to acheive an errection anymore. Is this a typical side effect of the disease and if so, how long does it normally last? I know every person is different but personal experience may be of help. I have suggested he make an appointment with a different urologist to have it checked out again.
Thank you
Maddie
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j

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yes it's typical
« Reply #203 on: May 16, 2008, 09:38:06 PM »

Pain like that is typical in the early stages but usually goes away.  That's what happened to me. 
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newguy

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Re: Women Speak Out about Peyronie's Disease
« Reply #204 on: May 17, 2008, 12:24:39 AM »

Maddie - I appreciate that this is a very troubling time for both of you, and urge you both to be open and honest with each other. It's important to talk about these issues and to be there for one another.

Has your partner visited this forum at all?  Does he take any supplements or medication for his peyronies ( http://www.peyroniesforum.net/index.php/topic,22.msg14252.html#msg14252 ), as many sufferers will be lacking in that area? It's 'possible' that he could receive some relief from pain if he takes a more pro-active approach. I only mention this, as from your posts, I'm unaware of any treatment your partner is receiving.

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LWillisjr

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Re: Women Speak Out about Peyronie's Disease
« Reply #205 on: May 19, 2008, 10:13:46 PM »

Maddie,
I can't encourage you enough to talk to your partner and to get to a urologist who specializes in this. This forum can help direct you to some very good ones depending on where you live. If Peyronie's goes untreated, things can get worse even if the pain goes away. The plaque can calcify over a period of time and this cannot be reveresed.
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maddie

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Re: Women Speak Out about Peyronie's Disease
« Reply #206 on: May 20, 2008, 06:54:12 AM »

He won't talk about it.. Everytime I bring it up to try and understand better what he's going thru he gets angry and yells at me that it hurts a lot and he doesn't want to talk about it!! I've put him onto this fourm but he doesn't seem interested in checking it out. I really don't know what i can do to help him when he clearly doesn't even want to talk about things. He is back in the UK at the moment and I have suggested he goes to see another urologist to get a 2nd opinon on treatment options. The only thing he is currently taking is Vitamin E tablets. Is there anything else he can take to minmise the pain? I think that's the worst part of it right now for him.. it's been painful for him to get an errection for over 2.5 months now. He has not masterbated nor have we had any sexual activity in that 2.5 months.. which i'm not complaining about because i know it's physically hurting him to get hard.
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Old Man

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Re: Women Speak Out about Peyronie's Disease
« Reply #207 on: May 20, 2008, 10:18:02 AM »

maddie:

I have worked with many guys in my counseling program for prostate cancer in my local support group. The hardest part of my work with the guys was to get them to accept that they had a problem that treatment could help.

It is somewhat like getting an alcoholic to admit they are one, a person must first realize that there is a problem before they will seek help. Then and only then can anyone help the affected person. If he takes the offensive every time you approach the subject, maybe getting one of his most trusted personal friends involved could help. By approaching him in a very subtle way that your partner would not know that you instigated the conversation, he might just open up and talk to that person.

Maybe others here will have some input also.

Old Man
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j

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forget Dr. Phil
« Reply #208 on: May 20, 2008, 04:46:54 PM »

My feeling is that there is nothing to be gained by pressuring him to "do something" or "talk about it".   

This is a very hard thing to come to grips with and it takes time - sometimes quite a bit of time. Get a diagnosis from a knowledgeable urologist, sure. That gives it a name and takes away some of the feelings of shock and weirdness. Then, let things be. Running to different doctors won't help, and you're likely to get a different spin from each one, just creating more confusion.   The reality is there's no really effective treatment at this time.  Traction devices and use of a VED may help but for a guy new to this problem, those things just sound like an embarassing nightmare. 

Each of us has to handle this in his own way and the standard Dr. Phl approach - basically a demand by others, to talk about a problem in excruciating detail - only makes things worse.   His image of himself has taken a serious hit, right where it hurts most. Don't subject him to a second attack, on his privacy.


These are just my opinions and others here will certainly disagree.

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Tim468

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Re: Women Speak Out about Peyronie's Disease
« Reply #209 on: May 21, 2008, 12:44:15 AM »

I agree that there is nothing to be gained by "pressuring him" to talk.

However, you are in  a relationship, and he has a role to play in your life. If he yells at you when you express concern and love for him then he needs to see that behavior as hurting you. You can certainly talk to him about that - to say " I am concerned about you but when I try to talk to you about my concerns, I feel sad because my attempts at connection do not seem to work" (or something like that).

Having listened to men come here and rant but be unable to really take self-caring actions, I have wondered what really happened when they said "she left me because of this". I have often thought that they were unaware of how much pain they were in  or how toxic it was to others.

Hang in there.

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

maddie

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Re: Women Speak Out about Peyronie's Disease
« Reply #210 on: May 21, 2008, 06:51:36 AM »

I do love him and would not ever consider leaving him because of he peyronies.. however the new "shutting me out" is really starting to take a tole on our relationship. I am in no way "pressuring" him to talk. I only meerly suggested that maybe he looked at this site and he may see that he's not the only one in the world dealing with this. But since being diagnosed his entire attitude has changed.. I feel as though he's pushing me away and now it feels like we are more roommates who sleep in the same bed than two people in love with eachother. I do ask him from time to time if the bad pain is still present.. and he takes that as me asking "are you ready to have sex yet" which is completely false and I've explained this to him. I only want to know how he's feeling... that's all. I guess just keeping my mouth shut and dealing with this "silent" period my own way is all that i can do at the moment.

Thanks guys for your replies. They're greatly appreciated.
Mad
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j

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anger
« Reply #211 on: May 21, 2008, 07:53:44 PM »

I've probably already said too much but...  if he's just totally locked in by anger, then yes he needs to realize that, and start to understand its effect on you.

Reading between the lines I am wondering if there are other things wrong in his life right now, and maybe nothing positive happening for him that might offer some compensation.  Has his job turned to crap?  Some tangly family situation dragging him down?   

I'm 50-something and to some extent at least, I can manage this problem and go on with my life. But at 28, this would have hit me like a brick between the eyes. The shock, anger and embarassment would have just knocked the wind out of me, psychologically and it would have taken me quite a while to pull myself together.  That is all I'm trying to say. 

Sometimes in life, all we can do is try to lighten up, step back and look at the big picture for a while before going on.   Things can get better, and wounds can heal.  Like tim468 says, hang in there.

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jackisback

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Re: Women Speak Out about Peyronie's Disease
« Reply #212 on: June 13, 2008, 01:19:03 AM »

Ok, maybe I'm out of line here, but I see that there is this totally private forum for women here that only women are allowed to see.

I'm sorry, but doesn't this create the wrong impression? I would think that these general forums are mainly to help the men involved and the fact that the womens forum must be private...well it strongly implies to me that these women are stating some hard truths. Saying some things that would depress the hell out of the afflicted who are trying to be optimistic and get on with their lives.  And by having these forums, but making them private, well, it's just going to make us all assume the worst things are being said. For a single guy like me, it's not a nice thing to think about.
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Tim468

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Re: Women Speak Out about Peyronie's Disease
« Reply #213 on: June 14, 2008, 09:00:29 AM »

jackisback,

Your last line says it all: "For a...guy like me..."

Your post seems to be about you and your insecurities. I can say that no one has ever raised the concerns that you just raised. Previously, women had posted here and been subjected to some moderately crude responses that made it harder for them to post. The private forum allowed them more freedom to talk about what they are going through in helping their partners.

Overwhelmingly, the posts by women have been supportive of the partners, and focused on trying to understand why their male partners with Peyronie's Disease were shutting them out, or ignoring their pleas to get help, or refusing to talk about their feelings. Once in my memory, a woman expressed flat out anger at her partner's refusal to get help, and that she did not want to plan for a celibate life (he was refusing sex with her).

The private forum is not about women ridiculing men, nor is it about women joking etc. It is women getting support from each other in their efforts to support their partners in coping with this illness. Your concerns really say more about how tough this illness is on your sense of wholeness and manhood. Believe me, you are not the first guy who has suffered greatly in trying to cope with the uncertainties of this illness! Thinking that women are going to laugh at you and that if they do, it will do something terrible, is par for the course when someone young gets this problem.

Hang in there. As you figure out what your best options are, fear that it is all over for you will get better. Then, what women might say to each other on a support forum will not seem so mysterious or off-putting.

Tim
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Christine

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Re: Women Speak Out about Peyronie's Disease
« Reply #214 on: June 14, 2008, 12:29:15 PM »

Tim, I could not explain it better.    The Ladies Room is not a place for male bashing.   In many cases the women who contend with the helplessness of this condition do a great job at bashing themselves.   

It is a place for women to be able to really let their feelings show.   So often there are feelings of anger and frustration that we just need to get out. We struggle with the best way to be a help for our partner when they keep us at arm's length.   For those that are not dealing with this condition it is hard to imagine or understand what we deal with and in that light it is not comfortable to discuss with just anyone.   For our significant other who is dealing with their own feelings of anger, frustration, and similar emotions, it can be hard to dump what we carry around on them for fear of making the situation worse.   

Together in the Ladies Room, we can really be free to talk about what is going on inside us without the fear of being ridiculed.  We can uplift, support, and discuss with each other topics that are geared to just women.   It's a fact......we are wired differently.   Given the fact that we urge BOTH partners to engage and use the forum and also given the fact that both parties are at times not in the same place of acceptance, the privacy of the Ladies Room gives a woman a place to vent and share thoughts without the worry of their better half reading more into their words than is actually there.

Quite often the ladies post in the general forum and many are willing to give our insight on topics presented.  In the past, those insights are valued by the men who fear that their attractiveness to women is damaged because of Peyronies Disease.  We are all in this together. 

Thanks for your candidness jackisback.  You are not out of line.  Your question may have been pondered privately by many and posting has given the opportunity to explain.   

Blessings to you,

Christine

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Hitman

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Re: Women Speak Out about Peyronie's Disease
« Reply #215 on: June 15, 2008, 04:11:47 AM »

I want to thank Christine for sharing her thoughts. This is often very common among some of the families I've seen who have a male relative with prostate cancer. Often the daughter or wife would speak out about the condition while the man stays silent. I'm not sure why that is, but it seems that it is too embarrassing or a big "taboo" as if we've committed a crime. I think that men have to speak out more and society shouldn't vilify them for it nor should they stick their heads in the sands. Its not just women who have problems but men do as well and we need to make these issues heard. If women had prostates and suffered from our ailments things would have been different.

But my experience with some of these private chat rooms, generally has not been positive. too much gossip, ridicule and cheap talk about other people/members. (Not implying anything about this women's private chat room). Unlike some members here I'm not married nor do I have a girlfriend. I don't have issues addressing my wife's needs and concerns but I just tend to be weary of some chat rooms because some people are very good at talking trash behind your back (again not my attention to accuse anyone). However I don't let this cloud my judgement.

anyhow enough of this rant.
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Old Man

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Re: Women Speak Out about Peyronie's Disease/men don't speak out.
« Reply #216 on: June 15, 2008, 09:33:56 AM »

hitman:

You are 100% right about men generally not wanting to speak out about their "private" health problems. Most don't even want to talk to their partners/wives about anything. Years ago, 1995 in fact, I was subjected to prostate cancer which resulted in a radical prostatectomy. Shortly afterwards, my uro asked me to become a counselor for the group in talking with men who had been diagnosed with prostate cancer. That resulted in my being asked to work with the American Cancer Society as a counselor for prostate cancer.

Several of us in the prostate cancer support group were asked to take a course of "counseling procedures" under the supervision of a urologist. The uro gave us the necessary information to be able to talk with men who had been diagnosed with cancer. The ACS then provided us with prospects to work with on their decision about their cancer.

It was soon realized by us that men just did not want to volunteer any information about themselves in their private area. Some even would not ask questions about what they faced. They would just clam up and not say anything. Usually, we tried to get their partners/wives involvled in the conversation and they asked more questions than their husbands/partners. Some even then would not talk about their problem.

Why this occurs, nobody seems to know, except that men want to be the macho type and think they can conquer everything on their own. When it comes to prostate cancer, Peyronies Disease and other maladies in the private area of men, they should just bit the bullet, step up the plate and face their problems head on, but they won't. Have no clue as to what can be done to help with this situation other than to just open up and let go.

The above is just my considered opinion based on my counseling experience with men over the past years.

Old Man
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Hitman

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Re: Women Speak Out about Peyronie's Disease
« Reply #217 on: June 15, 2008, 01:03:18 PM »

speaking of prostate cancer I've read that the funding has gone from I believe 40ish million dollars in 1995 to 447 million by 2007 which is good to hear. Really like you said men should speak about the subject more openly.
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Christine

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Re: Women Speak Out about Peyronie's Disease
« Reply #218 on: June 15, 2008, 04:24:32 PM »

Hitman, 

I understand what you are saying completely.  Please let me make clear to all the men that male bashing is fervently forbidden in the Ladies Room.  Our purpose is to uplift, support and share ideas of how we can help each other as well as the partners that we care about that suffer this condition.

Just wanted to make that clear to any that think we are just gossiping in there.

Blessings to you,

Christine
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Hitman

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Re: Women Speak Out about Peyronie's Disease
« Reply #219 on: June 15, 2008, 05:26:56 PM »

Christine

I was not singling the Ladies's forum out and if it sounded like that then I sincerely apologize. I'm sure that you and the others are doing your best to help your partners. Its also not something I should be discussing because I'm a single guy and have nil experience with such issues.

thx for sharing
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Christine

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Re: Women Speak Out about Peyronie's Disease
« Reply #220 on: June 15, 2008, 07:22:23 PM »

No problem, Hitman.   You just voiced a concern that has been shared with me privately by PM by a few others and in doing so gave me the opportunity to make clear to all our purpose and possibly set some minds to ease that were feeling that men were getting thrown under the bus in there.   Speaking as someone that is very familiar with the underside of a bus, I thank you for words.

Christine
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jackisback

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Re: Women Speak Out about Peyronie's Disease
« Reply #221 on: June 18, 2008, 02:22:28 AM »

Tim - yeah, it was about me and my insecurities. I thought that's what this forum is all about (that and physical improvements)

"Once in my memory, a woman expressed flat out anger at her partner's refusal to get help, and that she did not want to plan for a celibate life (he was refusing sex with her)."

I would say she had every right to be angry!

Also, to Tim, Christine, anyone else - yes, i certainly understand that it's not good to have an atmosphere here where a woman has to chose her words too carefully, and i'm sure that the women's room is created with the best of intentions. No offense to anyone, and I'm glad the forum is here.
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susielou

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Re: Women Speak Out about Peyronie's Disease
« Reply #222 on: June 18, 2008, 04:33:28 AM »

HI EVERYONE
i have just joined this forum as i was perusing the internet about peyronie's disease, as i am beginning to think my boyfriend has it. is he only 20. there is a small lump halfway down the penis and the penis bends a little when erect. we still have great sex, but after we have alot of sex, i begin to get very sore and inflamed. i have never had this from too much sex before and i was beginning to think it was from the shape of his penis, and that little ridge that sticks out. that is how i heard about peyronie's disease. do you think it could be the beginning of peyronie's, even though he is only 20? as far as i know, he doesn't know anything about the disease, thought i have noticed that he is a bit self conscious about the shape of his penis. the other noticeable thing is that he takes a long time to come, like a really long time. which is great most of the time, but i begin to get sore!

anyway, i just wanted to hear what you guys thought about it. i dont want to confront him about it with my own diagnosis until i know a bit more about it.

and does it always get worse? is his erection likely to bend more and more as he gets older? or does it sometimes just stay at that level?

thank you guys, i really appreciate your comments.
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Tim468

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Re: Women Speak Out about Peyronie's Disease
« Reply #223 on: June 18, 2008, 08:13:28 AM »

Getting sore is probably about the length of time that intercourse lasts, rather than the shape of the penis, IMHO.

Talking about it could be tricky. Perhaps starting by asking him if he is self-conscious or concerned might be a place to start.

Talking about sex in general can be tricky for that matter. At 20, men usually still have a lot to learn about women. Talking about how you feel might be a good start. For all you know he is concerned that if he doesn't "last a long time", that you would be disappointed in him (more than one guy has masturbated during the day to make it easier to last longer that evening).

If the bump and bend are new then he is probably very concerned about it. If it is congenital, then he is probably just self-conscious about it. In either event, talking about it might be helpful!

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

zone611

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Re: Women Speak Out about Peyronie's Disease
« Reply #224 on: June 27, 2008, 06:06:35 PM »

I have Peyronies and I am able to still have sex with my Girlfriend, what I was wondering since my penis is bent (down) would that prevent her from getting pregnant?

We have talked about this and I am in the process of getting a fertility test which I suspect will be normal.  She thinks that because it is bent (down) and is not totally erect that the possibility of getting pregnant is reduced.

I did talk to my doctor about this and he explained that as long as there is penetration she can still get pregnant. basically having Peyronies does not change the outcome or reduce the changes of getting her pregnant. I am able to archive a full erection (bent) and Penetrate her with no problem. Some positions are more problems then others. (can anyone offer any suggestions)?

I hope someone can help me here because I very much want to have kids and I have heard conflicting ideas on the subject. I have had Peyronies for about 10 years and only recently have decided to investigate it further.

Please Help

Zone611
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crank

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Re: Women Speak Out about Peyronie's Disease
« Reply #225 on: June 27, 2008, 07:19:41 PM »

Hi Christine...

Did you notice that zone 611 registered as a guest and has no profile posted..??

Did you notice that zone 611  posted the same post in 3 forums..??

I suspect that zone 611 is a fraud...thinks he/she is funny..maybe I'm wrong..we'll see...

crank
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Christine

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Re: Women Speak Out about Peyronie's Disease
« Reply #226 on: June 27, 2008, 11:46:43 PM »

Crank,  I believe you are correct.

If I understand the process correctly.  He registered, posted and then removed his registration which is why he appears as a guest now.   

I will notify Hawk about him.

Thanks,   Christine
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LT48TM

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Re: Women Speak Out about Peyronie's Disease
« Reply #227 on: June 28, 2008, 12:07:54 AM »

Christine,

Is it possible that Zone611 posted in 3 forums because he / she is new to this post? Maybe he / she is self conscious about there condition.

I think they should be given the benefit of the doubt. I know I am new here and would expect fair treatment.

LT
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Christine

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Re: Women Speak Out about Peyronie's Disease
« Reply #228 on: June 28, 2008, 12:13:07 AM »

You are absolutely correct.   And I apologize if my assumption is incorrect.   However, I find it very strange that zone611 removed his registration after posting.  This is something that one does not do by accident.

I may not know the entire story regarding this situation.  But I also find it strange that he would come to a Women's Speak Out thread to post his question.

It the policy of the PDS to not censor posts and give all a fair opportunity to express their questions and interact to achieve the same goal.
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Re: Women Speak Out about Peyronie's Disease
« Reply #229 on: June 28, 2008, 12:27:02 AM »

I do not find it suspicious they went to a woman's speak out forum since there question was regarding pregnancy and children and what effects it might have with a family. All the other forums approach Peyronies from a male standpoint maybe they wanted a female point of view.

I would agree that they posting to 3 forums is a little strange but one could explain that they wanted to make sure all bases were covered. As far as he / she deleting there profile again they might be self conscious and they deleted there profile.

Just my 2 cents worth.

LT
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Tim468

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Re: Women Speak Out about Peyronie's Disease
« Reply #230 on: June 28, 2008, 10:45:02 AM »

Taking the post seriously...

If it can go in and ejaculate, then your penis can cause a pregnancy.

Peyronie's causes no effect on fertility unless impotence is part of it, and one can therefore not have intercourse at all.

Consider that the final word (in all modesty) and ignore "conflicting reports". I have no idea who would say that Peyronies Disease causes one to have difficulty getting pregnant - my advice is to ignore them.

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

Christine

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Re: Women Speak Out about Peyronie's Disease
« Reply #231 on: June 28, 2008, 02:20:50 PM »

LT48TM,

Your points are well taken and understood.   Thank you very much for offering a positive perspective on this.  I appreciate the input greatly.

Blessings,

Christine
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May the Lord Bless you  :)

maddie

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Re: Women Speak Out about Peyronie's Disease
« Reply #232 on: August 12, 2008, 11:26:52 AM »

Hello everyone, well it's nearly 8 months since my partner was diagnosed with Peyronies Disease and the pain is still very much there for him. We have not been able to have any sexual contact for the entire 8 months. Is this normal that the pain lasts this long when he gets an errection? he has been to 2 urologists and both say to continue with the Vitamin E and have also given him some ibproufin (sp?? sorry!) cream. Nothing is working and our sex life is now completely at a stand still. What is the next step from here now? I'm 28, he's 29 and this is starting to put a strain on our relationship as there just isn't any intimacy there at all anymore.
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Angus

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Maddie
« Reply #233 on: August 12, 2008, 04:19:32 PM »

Hi Maddie... does your partner read or post on this board? Encourage him to do so, and seriously consider changing urologists. Find a uro that will prescribe Pentox and get something going besides Vitamin E and Ibuprofen cream. Those two are the same as doing nothing at all. Find a uro with Peyronies experience that will listen to why Pentox is good for this and will prescribe it. There are other things that he can do to help as it sounds like he's still got inflammation. If he's in enough pain to prevent intimacy, then the relationship needs to be treated as well. This is an earth shaking condition, but there are ways to treat the Peyronies and ways to treat the relationship. I encourage you to post in the Womens message board if you haven't already done so. All is not lost... but a different uro would surely be a good place to start.
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j

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Re: Women Speak Out about Peyronie's Disease
« Reply #234 on: August 12, 2008, 05:42:33 PM »

I'm not really the type who offers advice on serious personal issues; but, I've been through this myself. So here goes.

Peyronie's is a like a brick in the head. It's a hard psychological blow and it takes a long time to get to some sort of understanding, and maybe even acceptance, of what's happened. In my case, many months - actually years, if I'm honest about it.  It makes a guy feel shocked, depressed, angry and just plain weird.   And the physical pain can last quite a while - also months in my case - depending on where the fibrosis is in relation to nerves and other structures.   

Eventually I did get somewhat used to my new non-straight self and for my wife, it never really was a problem I guess, although it took me a long time to accept that.  If a guy still has a reasonably normal erection and things aren't too uncomfortable for the woman, well then life goes on.  I try to think of it as sort of an athletic injury that just needs to be worked around.

I hope my fumbling reply is at least a little helpful. 


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maddie

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Re: Women Speak Out about Peyronie's Disease
« Reply #235 on: August 12, 2008, 07:34:05 PM »

 hi angus, we have been searching for a good urologist for months now with no luck. we are privatehelthcare covered in the uk but have not been able to find someone who can help him...he just gets mad every time i bring it up.. tonight i suggested we had a cuddle and i was turned down again. i feel more like his roommate than his partner. i don't  know what to do. i'm lost and often without words.. just tears of losing my relationship more and more each day. i don't kmow what to do. i've been so supportive, i'm at my breaking edge.. i love this guy more than life itself, sex is not important but intimacy  between us is.. i need to know the spark is still there....as far as he's concerned in my opinion i'm a selfish bitch and i'm pushing him asway....
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Angus

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Maddie 2
« Reply #236 on: August 12, 2008, 08:35:33 PM »


   Maddie, it's plain and simple... he's going to have to help himself. He is crushed by this, and lashing out at those near him. He thinks life as he's known it is over. Men that get this often think they are no longer men, but something else, and they don't know what, but whatever it is is not good in their minds. The name calling is unfortunate but will have to stop, and this will happen only if he gets the proper perspective of what is happening to him and realizes that his anger must be checked at the door. He must somehow discover that life isn't over; this is an injury or condition that can be treated, and not with Vitamin E. He will have to settle down, look at options, and ACT. He thinks he's alone in this; as you can see by being on the forum, that is NOT the case. He has friends here; he just hasn't met us. Try printing out some pages of VED and Pentox posts and present them to him for reading offline. Hopefully he will do a turn-about and realize that there ARE men who are doing things that are working, if not only for their Peyronies Disease but for their state of mind. He needs to realize that Pain is Inevitable in life; Misery is Optional. Might be hard to grasp that at this moment in time, but it is true. He also needs to settle down enough to where he can read the Child Boards of this Forum and ask that first question here. And that first question is a doozy for men... it's HARD for us to admit to other men that we've got a problem here. But he needs to do it, and soon. I wish you two the best. Ask questions often, as much as you like here. We've got him covered; he just doesn't know that yet  :)
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Tim468

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Re: Women Speak Out about Peyronie's Disease
« Reply #237 on: August 12, 2008, 08:40:00 PM »

Hi Maddie,

I am sorry to hear that you are going through this. Frankly, I think he needs a kick in the a$$ to get going. So let me play devil's advocate (and I know I am preaching to the choir to you). So what if two urologists do not have much to say? Start with a primary practitioner who is willing to work with you, and get him or her to prescribe pentox (trental). Keep asking and bang on doors if you need to to find a urologist who is willing to do more than nothing.

It might help to start the VED to stretch out the tissue or it will get worse (often it does, at least).

OK - so I ask myself - why am I telling you all of this? The problem is that he is not doing what he can to help himself, or to help the relationship. It sounds like you are doing a lot more than he is. It makes me want to hit him in the head with a brick to get his attention!

OK - enough venting for now.

Why does he get mad when you bring it up? Is he passive and willing to simply rest on what the doctors said? If he is relying on them, he is in for a surprise when a year passes, and then all they offer him is surgery - which runs a good risk of making him worse! Is he mad because he wants to avoid thinking about it, and your questions remind him?

He may think that you are mad at him for being "imperfect".

Could be a lot of things... but if he is not willing to talk to you, then you are going to be stuck. You could explain that your future as a couple depends on the two of you seeking counseling together, and then following through. I think that you have it right - this is a relationship problem, not a penis problem.

Hang in there. You are doing more than many others would. Tell him that you love him but that you want him to listen to you and to respect what you are trying to say.

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

mari

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Re: New need some men's opions
« Reply #238 on: October 13, 2008, 08:18:45 PM »

 

--------------------------------------------------------------------------------
Hi there!
I am new to this and will
not go into all the details of hubbies erratic behavior, just let me say I discovered something going on completely by accident. He left his email account up one morning and was running late. I got on the pc and thought I had left my account open..long story short, he has joined several porn dating sites. ( he does not know I know of this)  I decided to seduce him one night and then he told me about a curve upwards in his member, and that he was having problems maintaining an erection.  We made an attempt and it was painful for both for both of us.......we have made several other attemps with the use of Cialis....to no avail. Made an appt with the Dr. and he referred us to a Uro Doc. Hubby has been more than willing to
let me go to appts with him, as I have a bit of a medical background and know the ?'s to ask.
Hubby has an appt with uro on the 14th of Nov. In the meantime i have been doing lots and lots of research.............Here at this forum. I have been known to be called the "research queen" at times lol. We discussed his erratic mood changes (along with other things) and he has agreed to take the following, Please share your thoughts on this, if you will.

Super B Complex with vit c and Folic Acid. 1 x a day
Vit D3. 1 x a day
Vit E. 1 x a  day
One Source Ultimate Men's Multi Vit. 1 x a day (lots of goodies in this mix).
Gently applying Corona Bag Balm every evening to his member.

I work in an office building where there is a Dr. of holistic medicine down the hall, she also does PT and other things as well. I talked with her and she feels perhaps he may benefit from accupunture and E Stim. Maybe this will help break up the Fibrous tissue slowly. I was shocked when i told hubby about it and he was willing to give it a try!!!!!! We will wait to do that until we speak with the uro of course. I wanted to post this regime on the womens area in the mens forum for their opinions as well,  Christine sent me here, any and all opinions are welcome..constuctive critisism as well.
My regards, and thank you for considering my many ?'s.
Mari
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Tim468

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Re: Women Speak Out about Peyronie's Disease
« Reply #239 on: October 13, 2008, 10:37:38 PM »

Mari,

It sounds like you and he have a lot on your plate. I am not sure how best for you to integrate the two issues together. He is either slipping towards sex addiction (if not already there) which is a risk for those with sexual afflictions of any sort - they can get a need to feel sexy or to reach for greater levels of stimulation to get erect - and porn helps that sometimes.

So dealing with what sounds like a new sexual problem (from what you say it is not clear if the curve is new, or you just discovered it after a (long?) period of sexual inactivity), and dealing with a possible infidelity are two very different issues.

I suspect that if you do not trust him, that your ability to help him or support him will wither. So, from my viewpoint, dealing with the porn dating sites is really something that has to come first. I would not have sex with him if it is possible that he has had sex with someone else.

E-stim does not have much chance of helping - there are better avenues of treatment for him to find. I would speak to him pronto about the sex crap, and then send him here (hate it if he found out you knew by reading here!).

Tim

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

jackp

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Re: Women Speak Out about Peyronie's Disease
« Reply #240 on: October 14, 2008, 07:16:44 AM »

Mari
Sounds like your husband is looking for help in all the wrong places,
He will have to get himself off the porn sites. Easy NO! A suggestion would be have sex with him as often as possible. I do not mean intercourse, there is more than one way to have sex. One key is communication - communication - communication. No finger pointing just communicate about your lives, hopes and dreams.
My wife and I shut of the TV and go to the sun room at least 5 days a week. Talk starts about our day, our kids and grandkids. How do you feel today both physically and mentally.
Problems in the past when either of you wants to talk the other just listen in a nonjudgemental way. Things of the past don't matter but if thy are causing Post Trauma Depression let it out.
My wife has always been a talker and I just set and listen. This is a second marriage for both of us but we have been married 40 years now. I did not talk much. When I retired last year had to dig up some old military records. My ex wife started having affairs while I was in the Air Force. After the divorce I went into a deep depression for over 2 years. I built up a wall and would not talk about it. The Post Traumatic Syndrome hit me very hard and the importance from the peyronies hit me real hard. Over the last several months i learned how to communicate. Tore down the wall around my heart and made our relationship even more stronger.
Yes at our age 65+ we have sex 2 or 3 times a week. Now always intercourse but you do not have to have intercourse to have sex. Once youall learn this things will improve.
As for fibrosis get him a VED and go to the VED section. Old Man can give you a routine that will help. Over the last year I have gained back about 1/2" of loss from peyronies and corporal fibrosis.
Good Luck, just remember
Communication - Communication - Communication
Jackp
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mari

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Re: Women Speak Out about Peyronie's Disease
« Reply #241 on: October 14, 2008, 06:36:24 PM »

He was having problems with ed,  We had been having sex on a fairly regular basis for about six months with the help of Cialis. Then he began to become withdrawn and started being very argumentative with me over little things. In retrospect, I feel he was pushing me away because of the anger, confusion, embarassment and frustation of the curve ( i was not aware of it yet at this point). In turn I was getting frustrated too and feeling very hurt....what the heck did i do to make him appear to be angry with ME all the time?? Sooo...I took the bull by the horns so to speak and deciced enough was enough, got him into the bedroom and well  :-[.......i won't go into some of this, but it finally came out that he had a problem and showed me, I told him that was ok, not to worry, but when he was unable to even achieve and  maintain an erection, he gave up. I told him i understood and that was ok. I then got on the pc and looked at ed info, found this site that had a pic of a penis with peyronies....called him over to look at it and he shouted OMG that's it!! I made a Dr appt the following day, went with him and sure enough the PCP said it was peyronies and referred us to the uro.

It was a few days later i discovered the porn. Now in his defense, I think he was trying in his own way to become aroused.....maybe not wanting me to know of the problem.....thinking he could "fix" it on his own.
He hasn't met with anyone, I do trust him, we will be married 25 years next July.

As far as confronting him regarding the porn, I think that would be detrimental at this point. My focus is on his mental status and his self esteem, I'm putting my own feelings aside to support him through this.
I did have webwatcher installed . to watch the kids and am now tracking his visits to those sites...they have declined somewhat, so am relieved on that point.

In my previous post I listed some vit, what are your thoughts on those?? We plan on having him take those for a week and try the last cialis in the bottle this weekend to see if any improvement has occurred. I did mention the ved to him and he looked at me funny!  Need to ask Uro about that too.

I wanted to add that he does know I am coming to this site and getting as much info as i can before we go to the Uro. He's fine with that and i told him if there are any questions he has I will gladly ask them on his behalf. I am the one that does all research for anything we need that pops up in life..............love to research! lol

Sorry for the novel, but felt I needed to clarify a few things and add some extra insight, I know this messes with a man's mind and want to be as compassionet (sp?) and as understanding as i can be, that's why I joined this site.
I am very greatful for your candid responses.
Thank you and best regards,
Mari
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Hawk

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Re: Mari
« Reply #242 on: October 15, 2008, 01:50:47 PM »

Mari,

Your posts deserve a thanks and require no apology.  Your support for your husband shows your commitment and selfless attitude.  He is fortunate to have a partner like you to work through tis with him.

In regard to your recommended protocol, I would refer you to this recent post by George and only add that I would strongly recommend a Vacuum Erection Device (VED) and/or a traction device.

Please click on this link
Despise,  Let me make it easy for you,...

4)  At the same time as you are doing 1 thru 3, you can take things like Acetyl L Carnitine 2g per day, full spec Vitamin E 400-800mg per day (the synthetic stuff is useless), and Vitamin D3 (start with 2,000IU per day).  There are other things you can add to this later, if you scroll back over this thread and read carefully, you will find a lot of useful info.  You should also read the VED thread carefully.  BUT it is very important that you start with a medical diagnosis so that you know exactly what it is you are dealing with.  I really wouldn't worry a whole lot about the masturbation issue.  Obviously you shouldn't be doing stuff that causes trauma to your penis or any other part of your body for that matter, but typical generic masturbation does not cause or exacerbate Peyronie's.  - George

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Charlie50

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Re: Women Speak Out about Peyronie's Disease
« Reply #243 on: January 19, 2009, 10:27:40 PM »

Hi,
My husband was just diagnosed with Peyronie's after having had a total hip replacement surgery. He complained after he woke from surgery of pain on his penis. I looked at it and noticed a blood blister and alerted the Dr.'s and nurses. They all said that the blister was normal from the catheter. The pain bothered him, but we felt that if the medical personal said it was normal, it must be. Fast forward to 3 months later when we wanted to resume being intimate, and I noticed upon feeling his penis that there was a rather large bend in it. When I shockingly asked him what was wrong, he informed me that he had noticed it because it hurt when he would get morning erections. He failed to mention it to me as he thought it was no big deal. Anyhow, I made an appt for him ASAP with a Urologist. The Urologist imformed us that it indeed had plaque and it was Peyronies. He felt that it could be from the catheter. He told him to take vitamin E and told us to come back in 6 months. Anyone else here think that the catheter could have caused this?
I am only 46 and so frustrated to think my sex life is over. He is too, but does not seem to have the drive I do and this is causing problems in a 21 year marriage. HELP!!!!!!!!!
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Angus

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Charlie50
« Reply #244 on: January 20, 2009, 01:28:59 AM »

  Welcome to the forum. You and your husband will have support here. There is a vast amount of information on things he can do for relief and we will help make finding those things simple. Instead of repeating it, I refer you to the post just before yours by Hawk. Read that and follow the suggestions on what he should begin taking right now, and how to proceed from there. Do not wait to begin these supplements. If your husband chooses not to join us on the forum in the future, convey as much information as you can to him on useful supplements, the Vacuum Erection Device and its protocol and advice on finding a GOOD urologist. You recieved the stock uro Peyronies answer that has been given for fifty years and more... take vitamin E and see me in six months. This by itself does not work at all and that is documented here. Some things like Viagra and Pentox are prescription drugs but you can read the documentation here about their usefulness. Several men here have found relief and curve improvement using the Vacuum Erection Device (VED) and that is documented here as well.
    And your sex life together does NOT have to be over. However, with Peyronies, you must work to get it back. There is enough information here to get him on a multi-level approach to relief from this hideous condition. And yes, the catheter most certainly could have caused his Peyronies. Until someone invents a better, gently way to catheterize men, there will always be the danger of penile injury from being catheterized.
    When you have questions, post away...               Angus
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jackp

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Re: Women Speak Out about Peyronie's Disease
« Reply #245 on: January 20, 2009, 11:15:49 AM »

Charlie50
Welcome to this forum. I am in the minority here that believe Vitamin E is helpful with peyronies. My case started in 1995 and my urologist at the time put me on 400IU of Vitamin E 3 times a day and Potaba. The good thing is that in about 18 months my curve straightened but the bad thing is I lost almost 1.5 inches in length. Urologist at the time said that there was nothing I could do.
I took vitamin E until 10/06 when I had chest pains and had to have stents. Dr. then put me on Plavix.
To make a long story short my condition worsened over the years and developed ED, Venous Leakage, and Corporal Fibrosis. (Corporal Fibrosis was because of trimix shots trying to get an erection, little to no help.) 10/06 I was scheduled for a penile implant that had to be postponed for a year because of heart stents. 10/07 during implant procedure the doctor punctured my urethra and aborted the procedure. At that time  (10/06) I was 100% impotent and asked the doctor what could I do. He prescribed a VED for me that was custom fit in his office. Instructions were not great and hurt myself by over pumping, after that only used sparingly. After the failed implant 10/07 I started to do research and found this site. Old Man gave me a VED exercise for the VED I had an followed his advice. Within a few weeks I notice my penis was feeling healthier and that the length was starting to come back. In that year of so I gained back about 3/4 of an inch.
Local Urologist could not help me and finally I was refereed to Vanderbilt (200 miles away). Dr. Milam told me to keep up the VED exercise but because of the peyronies scar I had gained back all I could.
I know you are far from this but 10/08 I had a successful implant and now have a normal sex life. Surgery is always the last option.
IMHO get him on Old Mans VED exercise as soon as possible. This should help keep his penis healthy and keep size loss to a minimum.
With his sex drive down he should have his testosterone checked. Not just total but all the most important testosterone is the bioavailable, disregard the total T the bio should be at least 70% of the upper range of the lab.
I know this may be too much information all at once. Just encourage him to have sex as much as possible, sex is not defined as penis in vagina there are many ways to have sex, use your largest sex organ The Brain.
You are a long way from where I started. The other important advice I can give you is not to try shots in the penis for ED, that is what caused my corporal fibrosis.
Good Luck, there are many here that are willing to help. Peyronies is different for all of us. FYI I am 66 now.
Jackp
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UK

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Re: Women Speak Out about Peyronie's Disease
« Reply #246 on: January 20, 2009, 11:28:55 AM »

Charlie

Hope this helps - it came form a FAQ to a Peyronie's expert.

Q: What are the implications of Peyronies Disease secondary to catheterization trauma as regards the causal factors of Peyronies Disease? Why would inflammation in the urethra lead to Peyronies Disease? Why would injury to a separated part of the penis find its way to the tunica?

Dr. Mulhall answers: There exists no evidence that urethral catheterization causes Peyronie's disease. Indeed, as you point out the “injury” would be remote from where the vast majority of the plaques are located. It is likely that the trauma that is implicated in Peyronie's disease development is far more subtle in most men than that which may occur with urethral catheterization. Remember there are millions of men every year who are catheterized for a variety of reasons and thousands who live their lives with a catheter in place permanently and yet they appear to have no higher incidence of Peyronie's disease than the general population.

My opinion is that its a possibility if the curve is ventral or down as that is where the urethra runs, however if the curve is up or sideways I'd be inclined to agree with the doctor that its not linked to the catheter.
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Hawk

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Re: Women Speak Out about Peyronie's Disease
« Reply #247 on: August 18, 2009, 08:58:37 AM »

I am just bumping this Topic up where it can be seen so women can see it and feel comfortable posting here if they have general questions.  We have had no female poster on the main forum in months although we do have several posts a week in the Private forum.

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Dancegrrl

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New Woman to site
« Reply #248 on: December 12, 2009, 02:17:36 AM »

Hi all,

I have perused the site a bit on behalf of my boyfriend.  He has had Peyronies for a few months and it is getting worse quickly (pain, no bend). I helped him find a good urologist who is a specialist in Peyronies and he saw him, was prescribed drugs which he has been taking for a couple of months.  He has had no improvement and is in a lot of pain, feels the scarring/nodules (one on each side of the shaft) are getting larger.  He is depressed...sees no options and is not inclined to get on this site, explore alternative treatments...I found several postings on alt. treatments that seem promising but I don't know what else to say to him to get him to try the site...he's a "typical" guy only more of a loner than most and sharing this with anyone except me is currently not something he wants to do.  Our sexual relationship has not been great in the past as his libido is much lower than mine and he is mostly interested in "hard sex" not loving sex...so it's ironic that now this has come up...i don't think there is much sex in his future at least in the short term, but certainly not hard stuff.  Any advice for getting a guy who's great but really hurting physically and emotionally some help?  Are there any new trials that he should look in to?  What are the top 3-4 alt treatments that people are finding helpful?  Is chinese medicine an option?   Thanks!
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chiguy

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Re: Women Speak Out about Peyronie's Disease
« Reply #249 on: December 12, 2009, 08:45:38 AM »

Dancer,

It is important that he find a urologist that is willing to work with him. I imagine he is on some combo of vitamin e, l-arginine, pentox, and maybe a stimulant like Viagra or Cialis.

I took vitamin E and motrin for a while, but the pain persisted. After taking prednisone and alleve, the pain eventually subsided around month 9 or 10. Most sufferers stop experiencing significant pain around this point.

Many members also use a traction device such as a VED or Fastsize. There is a VED section in the forum. Mentally this disease takes a toll, which causes further problems such as ED, so it is important to stay positive.
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