My introduction

[csus]

I've been reading here for the last couple of weeks and joined late last week. Very informative and supportive forum. I'll try not to be too terribly long winded.

I'm 50 years old.

About 3-4 months ago wife and I had sex in a somewhat awkward position. The next day I was sore, but not terribly so. We are for the most part except for weekends working and living in diffferent cities as of the moment, only temporarily(that is currenty changing), so there wasn't a whole lot of sex going on in the meantime before......

About 3 weeks ago I started having painful erections in my sleep, which would arouse me from my sleep. Or I would just wake up with a painful erection in the morning. I couldn't really localize the pain, it was pretty much all over. Then one night I was drinking some beers and went to take a leak. For a lack of better word, I was kind of milking any urine out so I wouldn't put it back in my pants wet when I noticed a sort of hard something in there. On further examination I noticed all along the top the entire length it almost feels a like a cord in there.

I had initially searched out "painful erections", somewhat casually. But after feeling that hardness in there I became much more concerned and did more serious searching. That's how I found more information on the possibilities, and this forum on Peyronies. Everything I have read seems spot on that I more than likely have joined the ranks of the afflicted. But I do have questions.

My erections are not always painful. Is that inconsistent with Peyronies? If Peyronies, would erections be painful whether at night or awake?

I also sometimes during the day feel pressure between my legs and ball area. I don't what to think of that?

I've never really paid that much attention to the question as to whther I have a curve in my dick, or looked in the mirror while erect. But it does seem I am curved upward. However, I am not certain if all this other stuff wasn't going on I would just call it a raging hard on. Treating my dick in such a clinical way, i'm not certain whether the slight erection problems I am having are in my head or something else.

I'll save any other questions as follow-ups. My head is kind of spinning right now. This whole thing has been causing me extreme stress. It seems like a bad dream I just want to wake up from. It disturbs my sleep, and i'm having bizarre dreams about it. It's depressing. I fould myself wishing I would rather have cancer than this.

Although it is difficult to discuss, I have spoken to my wife. We've been together for 27 years, she's a wonderful woman, very supportive, I am so lucky to have her by my side. I haven't seen a doctor yet, but I must make the time to do so. Any suggestions for a good Dr in either the Norfolk/Virginia Beach Virginia area, or Richmond Virginia? I see one for each listed here, but any opinions would be greatly appreciated.

Action thus far taken: I've never been much on taking pills and such. However so far, vitamin E 400 iu once a day, Co Q-10 100 mg twice a day, and a multi vitamin. I also had some anti oxidant powders I was doing once a day, but the last of those was this morning.

I've not been having intercourse. Although sometimes i'm afraid of what I might see, I self stimulate to erection, some masturbation. I've been of a mind to take it easy on things so as not to aggravate the situation.

I had a good day yesterday, the first in a while, thinking it might be something else rather than Peyronies. Although i'd felt pressure between my legs, but no painful erections since last Thurs...I was starting to feel a little positive.........until last night, woke up twice with painful erections. It occupies my thoughts constantly. I just want it to stop.

[jackp]

csus7

The pressure you describe in your testicles and between your legs could very well be a prostate infection.  You need to see a urologist for an evaluation as soon as possible.  The other symptoms could be peyronies or penile injury related. Again you need to see a good urologist or Male Sexual Function Specialist.

Jackp
http://jackp-penileimplant.blogspot.com  

[Litani]

Csus7,

I am 49 and 3 years ago I had pain during erections that used to wake me up. I also could not pinpoint the location of the pain. My erections were painful all the time.

At the time I saw a uro that did so many tests and could not find anything.  He did not mention peyronies.  The pain went away by itself. Three years later I saw a curve.  To this day I have no idea if they were related.  Even if the pain goes away I would stay away from rough sex and girl on top.  Anything that could injure the penis.  Find a uro the specialises in peyronies.  I always wonder if going to a peyronies specialist the first time would have made a difference.

[james1947]

csus7

I will add to the two posts bellow that if it is Peyronies, you need to get on treatment as soon as you can. Not treating Peyronies in the early stages ca be disastrous.
Also if it is prostate infection need to be treated with no delay.
If you didn't read yet the link bellow, click on it:
MUST READ BEFORE YOU POST - Information for new members - Peyronies Society Forums

Welcome to the forum
James

[csus]

Thank you guys for the replies. I did read the "Must read before you post" section. I read a lot of things, and it's heartbreaking. I feel so bad for some of you (us) guys, it brings me to tears.

But I gotta get it together, buck up and be strong. I just don't know exactly what to do first. Do I go to my reg doctor(it's been so long since I have gone my wife says they now consider me a new patient, it's going to be difficult to see him before late December( I believe it is), as he's booked and now does some kind of double duty as head man at the facility). Or, do I see one of the doctors listed on this site, only one here locally, and one in Richmond where my wife is currently working full time? Or, someone posted a link to a Peyronies specialist site that has 3 here in Virginia Beach, but none in Richmond(where my wife really wants me to go). I'm self employed and my slow season is getting ready to (possibly, you never know) occur. So I may have to travel for appointments either way. Are the doctors listed here tried and recommended as knowledgeable and receptive to proactive treatment of Peyronies? Or would I be better off seeing one of the doctors from the link to a Peyronies specialist site another gentleman posted here in the forum? My wife is going to find out the referral procedure, or if I even need a referral for insurance purposes. I've also reached my deductible earlier this year with cataracts surgery, joy joy. So i'd like to get as much done before that kicks in again after the new year.

I'm not a child, but I just don't know what to do right now. I also at times have avoidance issues, especially when it comes to my health, i've never been one to rush to the dr when I feel bad.....the ol' yeah, i'll just ride it out, it'll resolve itself in time". In fact after years of blurry vision in my left eye I had just excepted that I was going blind in one eye until I finally saw someone and found it could be corrected with surgery. I suppose as I get older I need to ditch that mentality, especially now.

As far as my earlier question: Is it (in)consistent with Peyronies that my painful erections are only nocturnal? Brain storming I wondered if the reason I have pain in my sleep is because I am laying on it and don't realize until it becomes painful. So last night I was careful to sleep on my side. I woke up one time, it wasn't really painful, just a tight erection, on the top. Like I said earlier, I feel pretty certain with that cord feeling thing along the top, and I also feel a couple of little very small pea type hard places on the cord. What do you think, sound consistent with Peyronies? I realize i'm asking the impossible, for a diagnosis here, but just fishing for an educated opinion.

Another thing: Last week I was up with my wife in Richmond. My penis has always kind of been a barometer of my mental/emotional state, so to speak. I was very distressed about this whole mess, and reading a lot on the net, here particularly. So, I noticed my dick was "turtling", like drawing up inside of me, which caused me more stress wondering is this what I have to look forward to for the rest of my life. It felt cold, hard on the inside, like it was dying. It was rubbing on my clothing and becoming sore. I broke a vit E pill and rubbed it on. It helped a lot. But from time to time it will turtle again. So, I was doing some reading last night(until 4 am), researching "hard flaccid", and some cronic irritable prostate thing. I thought, great, maybe I have that instead of Peyronies, until I discovered that can be just as devastating. Then discovered you can have both at the same time, or there may be a link between the two.

I just don't know what to think or do. Should I just go to the Peyronies specialist first for the ultra sound and take the other issues from there? I need to get on Pentox immediately, right? But if I reveal the other things I might get a series of testing first. Will the ultra sound be on the first visit, or will that be scheduled at a later date? Can I somehow request the test for the first visit? It's embarrassing to even go through the screening process with (female) nurses when even scheduling an appointment...."yes sir, for what reason will you be seeing the doctor on your appointment?". I'm also due for all the mid-life testing...colonoscopy and such, I received the advisement from the insurance company some months back.

I apologize for being so undecidedly scatter brained about everything, and the long posts. I'm just at times a bit paniced and paralyzed with fear. I appreciate your patience.

 

[Litani]

csus7,

In your shoes, I would make an appointment with a peyronies specialist.  If he says you have peyronies make sure you get Pentox.

In the meantime, I would take all the supplements listed in the "Must read post" with the correct dosage until the appointment day.  If the uro says you do not have it, then stop them.  Otherwise, at least you are doing something until the appointment day.

I would not pay too much attention to flaccid penis.  It has a lot to do with mood, temperature, and how worried you are.  

[Norm]

Csuspended7th (your formal name),
Also remember that the Peyronie's specialist is also a urologist. If it is not Peyronies Disease, you are already in the right place for whatever it turns out to be. Btw- a VED will help overcome the turtling' as will Cialis daily.
Norm

[csus]

Norm,

I am a guitar player from way back. That's why I chose that name, not really realizing at the time the potential for relevance. I almost and sort of regretted the choice. I hope it's not offensive to anyone, it was not my intent.

To all:

There are doctors listed here on this site. Some have personal anecdotal comments, some none. If I am not mistaken, some have not so good comments from those who have seen those doctors. The doctors in my area have no comments. The one in Richmond is at Medical College of Virginia...which seems as if it might be perhaps more on the cutting edge or receptive to a more proactive approach rather than prescribing a wait and see approach which I would like to avoid. I don't know.

Someone here was kind enough to post a link (thank you) to Peyronie's Disease Advocates, wherein there are 4 doctors apparently sharing the same facility in my direct area, Virginia Beach. Being listed on such a site, would that be a better choice?

Any opinion(s)?

Just checking and doing a side by side, I see that one of the doctors is listed both here and at the link provided. His name is Gerald H. Gordon, Urology of Virginia in Virginia Beach. I hope someone who reads this thread may have some experience with this doctor they may be willing to share.

I want someone who will hear me out, examine me, and prescribe Pentox while in the meantime have me scheduled for an ultrasound(if not performed on the same day as my first visit). That is my hope. I don't see a problem with taking the Pentox even though it may come to light that I don't in fact have Peyronies. All things considered, it is my opinion that I do in fact.

I am going to thoroughly read, understand, and follow all recommendations provided in the must read sections of this site to make my doctor visit as advantageous as possible.

I will keep everyone updated.

Thanks guys. It means a lot.

[Knight]

Csus7 I wouldn't worry about the name choice, it seems Am ( a minor) offense to me.

Sorry for the poor attempt at a bit of humor, I'm a player of about 30 years as well.

Good luck in your battle against Peyronies Disease. You will find very knowledgable and helpful guys on this forum. Trust them and follow them.

Regards,

Knight

[Norm]

C(for short),
I have been playing for as many years as you are old. That's why I spotted the name.

The doctors on our list were referred, or not referred, by members of this forum. That may be a limited endorsement, but it is better than nothing. We don't recommend a doctor unless someone here has had a personal experience with that doc. As for the PDA site, we have no knowledge of those doctors unless they are also on our list. We won't say, good or bad, without a word of mouth referral. I know that does not answer your question, but it's all we've got. In any case, whatever doc you choose to go to, arm yourself with all the knowledge you can glean from this forum before you go. Make sure they do not try to sell you on something contrary to what proven experience has shown successful.  

[csus]

It seems odd to talk so openly about such things. I've always just taken my dick(i hope that's not inappropriate verbage here, it just seems more natural to me) for granted. It's there when I need it to do what it should do, other than that I don't or didn't give it much thought. Now it seems my whole world is revolving around my dick, like i'm in the damn twilight zone or something.

Anyway...

Like I said, wife and I are maintaining two living locations. Me primarily here at our house, her 2 hours away in the apartment...not that we're rich, so the expense of all of this is a concern. I'll be spending more time there once work slows, as it always does this time of year. I have this urge or desire to monitor things, although i'm scared s-less of what I may see. Given the current circumstance, I don't exactly feel the urge to pop an erection without some kind of hands-on approach. I've read that erections are good, that makes sense. But should I be concerned right now? Would it be best to just let things rest rather than potentially inflame the situation further? As I also said, I want to monitor any progression in the curve. One of my biggest fears as of right now is discovering a pronounced curve upon finally investigating. What absolutely horrifies me is presenting it to my wife.....don't get me wrong, we have spoken about everything, and I know she loves me and will remain supportive through whatever the future brings.

I'm rambling, sorry. Should I stimulate myself every day with a lubricant wife and I use on occasion so as to monitor, stretch and keep blood flow, or let it rest until I see the doctor and see what he says? Is there a chance I could do more harm than good? I currently as I sit here feel some tightness on the top...I don't know that it is pain, but tightness, pain, it's not supposed to be there....it's a heck of an annoyance. I took an anti inflammatory tab last night, and will again tonight.

In short, I wanna see, but in a way I don't wanna see. I want to be proactive, but I don't want to do more harm. See, or wait for the doc appointment?

I can't say how much I appreciate the feedback, and your patience. I don't mean to be a me me me & my penis pita.

[Norm]

You are going to have to cowboy up. We've all had to. She's going to have to know and see. You may as well go ahead and involve her because first, you can't hide it, and second, because she will be a large part of the decision on how to work toward improving it. Be honest. Let her know how concerned you are. Women have a tremendous capacity for empathy. She may well wind up being your source of strength in all this. You really need to get to a doctor soon so as to rule out anything that is urgent and could be fixed there and then. Assuming you get a diagnosis of Peyronies Disease, then you can formulate a game plan from there. The non-invasive approach takes time. The invasive approach involves surgery. Neither one is going to be easy to keep from her. Most of the men here talk about how supportive their women have been, mine included. So enlist her help, get to a doctor, and take action. The same amount of time is going to pass whether you do or don't. So make the best use of that time. Good luck to you.  

[csus]

Cowboy up, of course. Thanks.

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The Doctors list here may require updating. The number listed for Dr Gerald H. Jordon 757-457-5110 in Norfolk Virginia has a perpetual busy type signal. I guess it is a no longer functioning number. However, through the Peyronies Disease Advocates website the number listed 757-457-5125 is functioning. The number reaches Jordan-Divine Center for Reconstructive Surgery and Pelvic Health. The recording lists several physicians, none of which are Jordon.

The receptionist who answered after clicking the appropriate number asked the reason for the visit. I said, "Um, the development of scar tissue". She asked in so many words for me to elaborate. I said, "Um, the development of a curvature". She said, "Oh, possible Peyronies Disease?" She asked something to the effect, was it a self diagnosis or was I referred by another Dr. I said I found them through research. She said, "Ah, through the internet? I thought maybe that was the case when you said scar tissue". She said the appointment computer was down and she would have to call me back. Then took all of my information. Said I would receive instructions on what to bring on my first visit, including 6 pictures of my erect penis.

I don't even know who that was...she might be someone I know, or knows someone I know. When asked a possible time frame she said probably around the first of December. I didn't mention, think to or even know if I should mention any other feelings i've had down there so as not to confuse the issue. I could barely get the words that I spoke out. I don't know what to do. This is so f-d-up. I don't know that I can do this...might be just too much.

edit: Wife just called. Said, No, can't wait until the 1st of December. I'm not sure what to do, open the phonebook blind folded and point? She asked if I would like for her to find someone. I said okay, just pass the name by me first so I can do some research, if possible.

Btw, as i've said before, she's very supportive, totally up to date on everything, I haven't hidden things from her, and obviously as evidenced involved. My concern with letting her see is because I do not want to hurt her or cause her to feel the stress and shock I am experiencing.

That is all.
 

[csus]

Hello everyone, hope you all are doing well and are in good spirit. I wasn't sure exactly where to post this, so I decided this was as good a place as any.

I first introduced myself a few weeks ago. Onset of symptoms approx 8-10 weeks ago...very painful nocturnal erections, followed by the discovery of hard places in the dorsal area of my penis, then some curvature, tightness, annoying pain/discomfort. After research, discovering this forum, and of course my symptoms, I self diagnosed myself as haviung acquired Peyronies. I made an appointment to see a urologist.

Today I saw the urologist, accompanied by my wife. I am now an official member in the club. I was diagnosed as having Peyronies. Although it wasn't necessarily what I wanted to hear, I expected it and it wasn't a shock. It's a real roller coaster and sometimes my emotions still go down the toilet, but for the most part the shock has subsided, it's now time to move forward and act.

This site has been such a wealth of information and support for so many. I would otherwise be in the dark on what to do. Some of you have improved to the extent that you could move on with your lives, but you still post to help others Thank you so much guys, to everyone.

[Norm]

I am sorry to have to welcome you to the club, but you are in the right place. You will find more support and information here than anywhere else. Now that you have confirmation of what is wrong, you are already ahead of the game by being here. Do you have a plan? Did you ask about Pentox? You have been here long enough now to have some ideas how to approach this problem. The key is to get started if you haven't already. As always, we are here for you, Cowboy.  

[csus]

Howdy Norm.

Yeah, I was trying to avoid getting too long winded in this thread while deciding where I should put any other information. I was a bit embarrassed with how hysterical I may have come off when first joining this forum, figured i'd be best to take a deep breath and calm down.

I got the pentox! Well, the pharmacy had to order it, it will be in on Monday. I was so relieved and thankful. In part I owe it to you guys, this forum. I went armed with a few of the studies i'd printed from this site, just in case. I told him about the forum, how much knowledge on the subject there is within these pages. He was aware, and said he actually comes here every once in a while!

Anyway, when I find the time and decide on the correct thread I will provide more information on my thoughts and experience with Dr. Ramon Virasoro at Urology of Virginia. Nice guy.

I also have a prescription for Cialis.

VED representative comes every Friday to the facility. I have an appointment next week. Speculatory at this point, but the Dr and (especially) I hope a copay will cover the cost.

So: pentoxifylline 400 mg (3) times a day

Cialis 5 mg daily

L-Arginine and Acetyle L-Carnitine

I'll continue with the vit e. I'm taking a few others, but sporadically....green tea tabs, "Fish, Flax, Borage", and I have some D3 i've taken, don't have many left....who knows.

I'm feeling hopeful, empowered.

^^ although as has been said many times in this forum...it isn't a sprint, it's a marathon. So, i'll continue to put one foot in front of the other.

Thanks again everybody.

[Norm]

C,
I really do like the daily Cialis. Even if I did not have Peyronies Disease, I would like it. It makes my penis hang much fuller. And it brought back erections like I used to have, even in the morning. The benefit to this is that erections are good. The blood flow into your penis is good. I also recommend  VED therapy unless you have made up your mind to go another route. VED therapy also facilitates blood flow into your penis, only it is controlled, planned, and repeated. Everything I am suggesting helps with blood flow. An added benefit of the VED is that it can help restore lost size in both length and girth. Traction only helps length. Anyway, you are on the right track. Keep it up and don't slow down.  

[csus]

I suppose like others have, it is not a bad idea that I should update, in part to keep a journal of sorts.

In a few days it will be 4 weeks since official diagnosis(approximately 12-14 weeks I suppose from initial onset of symptoms) , and taking the pentox 3 times a day, as well as L-Arg twice a day. I have also been taking 5mg Cialis daily. Something or for some reason I am or was feeling ill most of the time. I felt generally bad, a heartburn type feeling, irritated esophagus, it was even somewhat painful to swallow unless I chewed my food really really well. I had a lot of stomach rumblings, gas and a lot water in my stool. I even on one occasion am pretty certain I saw blood on the tissue after I wiped. My sleep patterns have been consistently interrupted by nocturnal erections which are extremely tight. Psychologically I am not fairing well. There are isolated instances when I feel somewhat normal and/or positive. However, the majority of the time Peyronies Disease and my condition hangs a dark cloud over my head. At times I almost feel a relief that somewhere in my head the decision has already been made that I have chosen not to continue in the long run to live with this condition for the rest of my life. But alas, i'm probably too much of a coward to perform the act.

I also have other pains, and such. I have an occasional pain in one butt cheek, have for some time, and it's increased with time. I made the doctor aware on the pre-visit questionnaire, nothing more was asked or said of it. I don't particularly want to know or care. If it were cancer or something I don't care to fight it. I also experience pressure between my legs, balls and anus area. Sometimes when i get an erection i can't really sit without extreme pressure that seems to radiate out from between my legs behind my balls to along my dick to the head. Who knows.

Someone here stated that they take breaks from Cialis so their body would not get too used to it. So, I took a break. I had bought a fishing bag to hold my meds that came with a plastic tackle container inside which I am using the numerous compartments to sort my pills for daily consumption. Looking in the container I see I haven't taken Cialis for the past 5 days. My gastro system seems to have sorted itself out. Maybe it was the Cialis that was causing me to feel ill. I will however start the cialis again, if not today, soon.

Progression: My urologist diagnosed a 1" by 1cm plaque on the top dorsal area, just behind the circumcision scar on Dec 6th, a 20 degree curve. I have experienced since that date continual and consistent progression. I would estimate the curvature to be around 45 degree. The plaque has extended pretty much the entire length of the shaft, stopping just short of the glans. It is also quite wide, wider now where there was no plaque a few weeks ago, beyond the circumcision scar. My dick is much less pliable, plastica is sounding more and more of an accurate description. Even in flaccid it stands out from my body. Off and on I have bouts of hard flaccid, turtling, as well as times where my dick is chunky, almost swollen, although that could be partial engorgement. At those times, sometimes, the shape is similar to an ice sickle, wide at the base narrowing along the entire length to a small head. Things are not going well. Thus far I have little reason to feel optimistic.

If there is any reason to feel optimism, I still experience erections, both nocturnal and spontaneous. However the mind of it's own spontaneous erections seem to be less frequent. I have not been using the VED perhaps as much as I should, mainly out of fear that i might cause further damage, something just doesn't feel right. I plan to give it more of a go in the immediate future. Perhaps I just need to get used to it, and thus more comfortable.

I haven't had sex with my wife in about 3 weeks. The last time it was painful, and that was probably at approximately 30 degree curve. My wife is such a wonderful lady, is very supportive and understanding. I love her so very much. We have been together for nearly 30 years. She looks me right in the eyes, or forces me to look her in the eyes, and tells me how much she loves me and nothing will ever change that. I don't how or what i ever did to deserve her. In that I feel so lucky and blessed. On the other hand it is so screwed up and unfair that she is exposed to and must deal with this hideous disease. I once was upbeat, positive and strong, had a beautiful fully functioning dick. Now this is what I have to offer her, grotesque twisted deformity.

I went out of town for New Year's eve/day. I was able to see lots of family. Although the realization of my condition never left me, it seemed like things were okay, my condition wasn't priority, perspective was more clear that life doesn't have revolve around my dick. I have 2 older brothers, and we got to play music and sing together. I want to find the right opportunity to tell them. More so, I want to warn them to proceed with caution, to take care as there is the strong possibility there is a genetic pre-disposition to Peyronies Disease. It's an understatement to say i would not want them to experience what I am currently going through.


I suppose that is all for now.


 

[Knight]

Our situations and circumstances are very similar. I felt like I was reading something I might have written about myself. Hang in there brother. We can always opt out for a surgical solution. Funny, I've even found myself wondering if I'll be too far gone for a surgical solution before long. One thing about Peyronies Disease, it came really put a negative spin on everything.

I completely understand how you feel. If it matters, you are not alone.

[james12]

Hello everyone, this thread is really informative and it helps a lot. Thanks