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Author Topic: Erectile dysfunction due to Peyronie's disease (or something else?)  (Read 535 times)

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capspirited

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Hey everyone,

(first of all, pardon my english, it's not my first language)

I have/had (I'm not even sure anymore) Peyronie disease but my case is exceptionally weird and I've yet to read a similar case online.

It started when I was 18 (in 2015) but the beginning itself was pretty weird. I was going through a mild depression at the time and one night I had a panic attack that shortened my penis a lot and made it very very small, and very hard to have an erection (I don't think there was any curvature however). I stayed that way for about 2 weeks, then... It went back to normal in a few days! About a week or two after that, I woke up with a curved penis and pretty quickly (probably a few days, I don't remember exactly) it also greatly shortened the penis and made it difficult to have an erection, just like a few weeks before but this time with a huge curvature and very strong plaques, so I think the two (Peyronie's disease and the panic attack that shortened my penis a few weeks before) were related.


I stayed that way for an entire year. Then, in 2016 (almost exactly a year after): miracle! It started improving on its own and in a few days (without taking any medication) the curvature was completely gone, the penis (almost) back to its normal size and the erections good and strong. The issue was that, right after that curvature completely disappeared in a few days, another one (less severe, still affected the erections, but the size was less affected and the curvature less severe) appeared! All of that in about a week, in may 2016, when it didn't change for an entire year!

Since then, it's been improving but extremely slowly. Again, without any medication, an urologist at the time made me take vitamine E for 3 months but I didn't notice any difference in the rate of improvement during that time, it was still improving but just as slowly as when I stoped taking it. The weird thing is that the first curvature (that I mentioned above) was there for a year, was extremely severe and greatly shortened my penis but then... Boom, it was gone in a few days. This one is much less severe but it's going away extremely slowly and I'm not even sure it's improving anymore because the curvature is almost non-existant. I'm still struggling to understand why the most severe one went away much quicker...

Today, the curvature is almost completely gone, it's still there but it's very slight. But I still have erectile dysfunction. Although it greatly depends on the day, some days I struggle to even have an erection, other days I have strong erections, still not like before I had Peyronie but almost there, especially in the last few months. It's almost embarassing to say this but I know all this about my erections only through masturbation, I'm still a virgin and at this point my only concern with Peyronie is that it might be an issue for my future sexual life... I'm gonna see an urologist in a few days to have more information but it's pretty scary even though, as I said, there's almost no curvature but the erectile dysfunction is still there (although it greatly depends on the day). And I don't have diabetes or anything like that because I made blood and urine tests about a month ago and everything was alright. So I suspect my erectile dysfunction is still due to the curvature even though I don't sense any plaques like I did when the curvature was much, much, more severe. There might also be psychological component, I don't know. But I've been really depressed, especially in the last few days.


TL;DR: My Peyronie's disease is almost completely gone yet I still have erectile dysfunction. What are your thoughts and do you think it could be solvable easily?

Thanks
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Hawk

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Re: Erectile dysfunction due to Peyronie's disease (or something else?)
« Reply #1 on: January 11, 2020, 10:46:30 PM »

Capspirited,

I have heard many stories about men in the middle of stressful divorces or other stressful situations developing Peyronies Disease.  What is strange is the spontaneous improvement without any treatment.  Statistics say that Spontaneous improvement does occur in about 5% or 10% of cases.  We get very few reports of that on the forum so I think those numbers are high  What occurred with me was developing some plaque on one side causing a 10-degree bend then developing it on the other side that pulled it straight.  That, however, causes a loss of size.

I cannot be sure if you "healed or if plaque on the other side corrected your bend.  In either case, the speed varies.  Since spontaneous healing is rare who can guess why the speed was different.  Just be thankful.

Erections are healthy.  Being rough with your penis is damaging.  If I were you I would be very gentle.  I would greatly reduce masturbation so you get more erections which oxygenates the tissue in your penis and keeps it healthy.  Be sure to read and follow the initial treatment mentioned here and take care of your penis.  https://www.peyroniesforum.net/index.php/topic,3180.0.html

Hawk
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Prostatectomy 2004, radiation 2009, currently 68 yrs old
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Hawk - Updated 10/27/18 - Peyronies Society Forums

capspirited

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Re: Erectile dysfunction due to Peyronie's disease (or something else?)
« Reply #2 on: January 12, 2020, 09:38:25 AM »

Capspirited,

I have heard many stories about men in the middle of stressful divorces or other stressful situations developing Peyronies Disease.  What is strange is the spontaneous improvement without any treatment.  Statistics say that Spontaneous improvement does occur in about 5% or 10% of cases.  We get very few reports of that on the forum so I think those numbers are high  What occurred with me was developing some plaque on one side causing a 10-degree bend then developing it on the other side that pulled it straight.  That, however, causes a loss of size.

I cannot be sure if you "healed or if plaque on the other side corrected your bend.  In either case, the speed varies.  Since spontaneous healing is rare who can guess why the speed was different.  Just be thankful.

Erections are healthy.  Being rough with your penis is damaging.  If I were you I would be very gentle.  I would greatly reduce masturbation so you get more erections which oxygenates the tissue in your penis and keeps it healthy.  Be sure to read and follow the initial treatment mentioned here and take care of your penis.  https://www.peyroniesforum.net/index.php/topic,3180.0.html

Hawk

Thanks for your response!

I'm pretty sure it was a spontaneous improvement, it just didn't go all the way. My penis was extremely small when the curvature was big, it seems that the less severe the curvature the bigger it gets, not the other way around. I went 3 times to an urologist and basically what they said was:

- First time in may 2016: that was during the week where the first, most severe curvature disappeared. The urologist said he could sense a plaque and gave me vitamin E.
- Second time in december 2016 (with the same urologist): that was after the second, less severe, curve developped right after the first one went away and I think, started improving right away but very slowly. The urologist said that the plaque he sensed a few months ago was completely gone, and that the current one was very, very small, much smaller than the other one. So I thought I was gonna get alright in a few days and he didn't prescribe me anything that time. The problem is that the erectile dysfunction was still there.
- Third time in january 2018 (with another urologist): that time I went because I had pain when urinating and thought it was somehow due to Peyronie's disease when it was in fact a urinary infection. This time, the urologist said he couldn't sense any plaque. But there was still something wrong with the erections; a slight curvature, and my penis was clearly different than before I had the disease.

I think today, as compared to january 2018, it might be slightly better in terms of the hardness of the erections and the curvature might be even slighter, although I'm not sure to what extent it improved and to what extent it might just be wishfull thinking. My only concern is to not be able to get hard enough to have sexual relations. And I'm worried that the next urologist I'm gonna see is just gonna say that he doesn't sense any plaque and that I'm alright, even though my erections aren't.

Now, in the last few days, I've been under the impression that my penis has gotten narrower because the plaque around is worsening, although maybe it's just visible in some moments or it's just in my head. And this is just wild speculation, I don't know if I even have what's called a "plaque", all I know is that my penis is still a bit shorter and narrower than before I had Peyronie, that the curvature (if any) is very slight; and that I have trouble getting erections. The thing is, I've masturbated quite a lot in the last few weeks (mostly out of worry of how this thing might be evolving), sometimes 3 or 4 times in the same day, and yesterday and the day before I was able to get good and strong erections that lasted quite a bit. And I tried again yesterday night and today but wasn't able to get one, just got a very flaccid one. Even after sleeping I got a very flaccid erection where the size and girth were alright (I'd even say pretty close to before I had Peyronie) and no (or very small) curvature, but it was not hard at all (unlike a day or two ago). So I'm very worried that it might be worsening... Even though, as I said, the size didn't change and I almost don't even see any curvature anymore. I'm just under the impression that there's some plaque around my penis that's making it narrower even though it doesn't seem narrower.

Those erection problems of the last few days could be due to excessive masturbation, or due to the anxiety and feeling of despair I've felt in the last few days. Even when I'm masturbating I can't think of anything exciting, I just think of how I must get an erection or it means that I'm getting worse. I don't know but I'm always worried that it might be getting worse or that there isn't anyway to get back erections hard enough to have sex (again, that's my only concern, the size and girth are a bit less than before I had Peyronie but not much and the curvature, if any, isn't very severe at this point). I even have trouble sleeping and have lost appetite, I'm constantly thinking about this.

But, anyway, I'll take your advice and stop masturbating for a few days and see how it goes.

Hope this is not too confusing, and sorry if I repeat myself a lot, I'm having a very hard time making sense of all this and I've been very worried...
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Hawk

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Re: Erectile dysfunction due to Peyronie's disease (or something else?)
« Reply #3 on: January 12, 2020, 09:04:00 PM »

Capspirited,

It does not sound like you read this https://www.peyroniesforum.net/index.php/topic,3180.0.html


It should be the first thing you read and the second thing you read.

Once you do you will know how useless and inaccurate it is to subjectively evaluate your penis without precise measurements.  Then instead of saying something like " I think my penis is a bit narrower".  You will say "I lost 1/8" in girth at the base but none on the rest of the shaft.

Also, you need to measure once a week at most.  Obsessing over daily impressions, and clinically trying to evaluate the quality of the erection you can get while obsessing is counterproductive.

Vitamin E will not hurt but it will do nothing in my opinion.  If you are getting some decent erections without a partner and without any oral meds then you should be fine IF you can stop stressing.  That is the first thing you really need to work on.
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Prostatectomy 2004, radiation 2009, currently 68 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

capspirited

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Re: Erectile dysfunction due to Peyronie's disease (or something else?)
« Reply #4 on: January 16, 2020, 03:17:46 PM »

Capspirited,

It does not sound like you read this https://www.peyroniesforum.net/index.php/topic,3180.0.html

Read it but after a bit of research I don't think Peyronie is the cause of my erectile dysfonction. I don't think it's caused by my now very slight curvature, I just found out about venous leaking and it sounds like the most likely explanation, I have pretty much all of the symptoms:
- Soft erections, even though they can sometimes get hard but far from what I had before.
- Difficulty maintaining erections.
- Soft glans
- Loss of length and girth

I still haven't seen the urologist so obviously I could be completely wrong but based on my (very, very, very limited) information it seems pretty likely.

So, now what? If I actually have Erectile Dysfunction due to venous leakage, can I hope for a surgical treatment other than a penile implant? If there is, would I also have my length and girth back if the cause is corrected?
And if a penile implant is the only option, does it mean I would loose even more length or is there a way to conserve my current length and girth or even slightly restore it?

I know these are extremely complex questions and I won't have all the answers here but basically tell me what you know about venous leakage... I'm very, very, worried that I have it...
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Hawk

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Re: Erectile dysfunction due to Peyronie's disease (or something else?)
« Reply #5 on: January 16, 2020, 11:43:51 PM »

All the symptoms you mention are in fact just observations of every normal penis when it does not have a firm erection and possibly some degree of erectile dysfunction from some cause.

That cause could be psychological, or physical and could be tempory or more permanent.   NOTHING you mentioned suggests venous leakage any more than it suggests nerve damage or stress and anxiety.

In fact, the very fact that you get firm erections at some times but not others is a case against venous leakage or nerve damage because those issues do not come and go.  You are a long way from jumping to conclusions about the issue.  I can only tell you what I would do if it were me.

I would stop all fixation on my penis for two weeks.  That includes no porn, no masturbation.  I would take arginine and all other supplements as specified in the Peyronies Survival Guide.  If you can get a prescription for a PDE5 inhibitor like Cialis, Viagra, Levitra, I would take a daily small dose of that.  If not I would try to get a prescription of 1/2 50mg Trazadone a bedtime for sleep and/or NTE's.  It is dirt cheap.

I would see if solid NTE's or morning erections return.  If not and you are still getting weak erections I would get a cockring and see if it remedies your weak erections.  I would go to an appointment with a urologist with a special interest in male sexual function not just some run of the mill urologist treating everything from female urinary incontinence to UTI's. 

By then you begin to have a picture.  Get started on those things you can begin right now.

Finally, it is important that you fill in your signature line if you expect any significant help.  It helps us help you.   This tells you how https://www.peyroniesforum.net/index.php?topic=10819.0
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Prostatectomy 2004, radiation 2009, currently 68 yrs old
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Hawk - Updated 10/27/18 - Peyronies Society Forums
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