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Author Topic: New user, disheartened… [thread continued]  (Read 437 times)

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FrankPD

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New user, disheartened… [thread continued]
« on: August 28, 2022, 10:37:29 PM »

Thanks for your reply :)

My deformation is complete I guess…

I won’t get a curve as my scarring is central. My penis is reduced in girth and length by about an inch at the glans end, coke bottle would be a good description, not that extreme though of course.

Constantly looking at therapies ATM.

I have reduced girth and def thinning towards the base. 

I hope my deformation is complete. 
Logged
Age 46
No injury
Diagnosis January 2022  
Have plaque
Hourglassing when flaccid and semi-erect
Still have my congenital curve, no severe curving
Massaging with vitamin E cream twice a day 
Low carb diet
Discomfort/aching sometimes
Best to all!

fartoolong

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Re: New user, disheartened…
« Reply #1 on: August 30, 2022, 07:22:20 AM »

Thanks for your reply :)

I have deformity? Or are you referring to not having a bend/curve?

R

Sorry I had partially misread your post. It's very good that you have no upward curve. Obviously the "coke bottle" narrowing is less than ideal but from my experience it seems less likely to become worse, and I have seen definite improvements in narrowing since changing my diet. During the early inflammatory stages especially, the focus should be on avoiding further damage.

I saw upward curvature go from zero to 90 degrees just through one callous urologist. The big issue I found with upward curvature is that even small increases can make sex that much more difficult. The point where the curvature occurs is also a factor.

When my narrowing was at the worst point I found it would buckle more easily during sex and you really don't want that, so the only relatively safe position was lying on my side. That seemed to make initial entry more difficult, but honestly I figure everybody will will be different in this regard depending on their relative state.

I think too many men with this focus too much on the curvature or deformity and not enough on their general health. Some think that just having a straight penis means they are Peyronies free, but they can still have all the underlying issues that might then manifest in other conditions. I have read reports that men with Peyronies are at considerably higher risk of various cancers, so as bad as this may seem I think a shift in focus towards your general health is a better strategy and hopefully the Peyronies sorts itself out as well.
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54 years old. First developed Peyronie's in 2012. Tried all the usual treatments without success and generally only got worse. Seeing improvement following a move to a raw whole food plant based diet, plus flax seeds & lots of water in summer of 2022

Legacy

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Re: New user, disheartened…
« Reply #2 on: August 30, 2022, 10:19:15 AM »

Thanks for your reply again :)

I’m confident that my peyronie’s is from a sexual injury (I remember the sharp pain!). Obviously, my general health could have effected the way I healed?

I’m not currently having sex, I don’t see myself feeling confident enough to have it in the foreseeable future, I’m refraining from masterbation also.

A problem I have at the moment is, I don’t really have anybody to chat with about this, I don’t have my parents anymore, and although I have good friends, the subject would still leak out…

As I said in my opening post, I can do without sex (I think…) I had very aggressive chemo 6 years ago, which destroys the reproduction parts of a male, so I’m never craving it, but psychologically I’m still programmed to think I should be looking for sex, if that makes any sense?

I have various questions I’d like to put to the forum, not sure wether I should do it here, or open several threads in the relevant categories?

R
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Sexual injury July 21. Painful erections, diagnosed Peyronies. Only just noticed the deformation, no proper growth in the 3rd of erection, no bend, proper erection though,
60, single, minimal sexual activity. Can live without sex, but…

fartoolong

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Re: New user, disheartened…
« Reply #3 on: August 30, 2022, 04:59:03 PM »

Peyronies will be a sexual injury for practically all of us, myself included. In my case my wife was in top and moved suddenly to the side as she was half way down the shaft. She is quite petite, but an erect penis is no match for 50 kilos moving in another direction and I felt a very definite pop.

There was no immediate change then a month or two later I remember getting an erection just before sex that suddenly collapsed seconds later around the centre like a deflating balloon and waved around, while the top and bottom remained temporarily erect. It was totally surreal and obvious something was very wrong. A few days later I saw GP (when that was still possible) and I was pretty disgusted by his reaction. He basically treated me like a freak when I described the symptoms and couldn't wait to push me out the room.

If you think about it porn actors they must endure all kinds or micro injuries from rough sex, yet they don't get Peyronies, or at least not the ones you see in videos. The key difference must be down to the way our bodies react to those traumas and that is why I say this needs to be viewed in a more global context. Sure we got Peyronies, however the underlying inflammation and associated issues were already there.

This might just as easily have manifested in some other condition, so in my opinion we need to switch off that inflammation and have our bodies respond normally to traumas and infections etc before we have a hope of fixing this. It's also important to curtail the risks of other potential conditions.

To put this in perspective, I went 8 years without getting even a mild cold, no matter how many sick people I was around and that's not because my immune system was strong; it was running on overdrive in full-time killer maniac mode, attacking everything in sight, including my best buddy penis. Just two weeks after eliminating all fish, meat and dairy I had my first cold and I took that as a very positive sign that my body was finally open to dialing down the the immune response to more suitable levels.

I know what you mean about not being able to talk with anybody about this and it's one of the harder aspects of this. The only people who know about mine are my wife and father. My daughter is 26, still living at home and hardly leaves the house, which severely restricts what I can do.

She must have seen all those supplements over the years and continually criticises my diet since changing, though it's very easy to be clever when you are 26 and never had any serious health conditions. My mother is visiting at the moment for several weeks and that is frustrating to deal with as well.

I never quite know what to make of my wife's reaction, because she seems to offer no real input if I talk about the Peyronies, so it tends to get bottled up inside. The only point I can really deduce is that she doesn't want to hear about it and honestly I would have liked to feel she was more involved over the years.

About six months ago my father was hassling me about various things, saying I had to do better and how they just got on with things in his day. That was when I decided to tell him just how stressed I had been about Peyronies and the way it had affected my life. He simply said he had never asked in years because I never mentioned it.

Ironically he's been better since then and shows a bit more empathy. The affects of Peyronies can be psychologically hard to deal with. Some men become very depressed. In my case I've been depressed at times, but more frequently it has been frustration and serious anger. That's why you need to develop some techniques that will allow you to be kind to yourself and find some peace if you find it taking over.

I agree that it would be tricky sharing this with a friend, not least because you can never really tell how they might react or behave afterwards. This will sound daft to some, but I have sometimes thought Peyronies is worse than cancer in the respect that you just cannot talk about it in the same way. Perhaps I've shared too much information, but I think it helps sometimes if we can identify with the same frustrations, as long as you use it in a constructive way.

Regarding your questions, I would certainly put them to the forum. It might be better putting them in different categories, because I figure users will likely only read a post or two for a new user.
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54 years old. First developed Peyronie's in 2012. Tried all the usual treatments without success and generally only got worse. Seeing improvement following a move to a raw whole food plant based diet, plus flax seeds & lots of water in summer of 2022

FrankPD

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Re: New user, disheartened…
« Reply #4 on: August 30, 2022, 11:43:33 PM »

Peyronies will be a sexual injury for practically all of us, myself included. In my case my wife was in top and moved suddenly to the side as she was half way down the shaft. She is quite petite, but an erect penis is no match for 50 kilos moving in another direction and I felt a very definite pop.

There was no immediate change then a month or two later I remember getting an erection just before sex that suddenly collapsed seconds later around the centre like a deflating balloon and waved around, while the top and bottom remained temporarily erect. It was totally surreal and obvious something was very wrong. A few days later I saw GP (when that was still possible) and I was pretty disgusted by his reaction. He basically treated me like a freak when I described the symptoms and couldn't wait to push me out the room.

If you think about it porn actors they must endure all kinds or micro injuries from rough sex, yet they don't get Peyronies, or at least not the ones you see in videos. The key difference must be down to the way our bodies react to those traumas and that is why I say this needs to be viewed in a more global context. Sure we got Peyronies, however the underlying inflammation and associated issues were already there.

This might just as easily have manifested in some other condition, so in my opinion we need to switch off that inflammation and have our bodies respond normally to traumas and infections etc before we have a hope of fixing this. It's also important to curtail the risks of other potential conditions.

To put this in perspective, I went 8 years without getting even a mild cold, no matter how many sick people I was around and that's not because my immune system was strong; it was running on overdrive in full-time killer maniac mode, attacking everything in sight, including my best buddy penis. Just two weeks after eliminating all fish, meat and dairy I had my first cold and I took that as a very positive sign that my body was finally open to dialing down the the immune response to more suitable levels.

I know what you mean about not being able to talk with anybody about this and it's one of the harder aspects of this. The only people who know about mine are my wife and father. My daughter is 26, still living at home and hardly leaves the house, which severely restricts what I can do.

She must have seen all those supplements over the years and continually criticises my diet since changing, though it's very easy to be clever when you are 26 and never had any serious health conditions. My mother is visiting at the moment for several weeks and that is frustrating to deal with as well.

I never quite know what to make of my wife's reaction, because she seems to offer no real input if I talk about the Peyronies, so it tends to get bottled up inside. The only point I can really deduce is that she doesn't want to hear about it and honestly I would have liked to feel she was more involved over the years.

About six months ago my father was hassling me about various things, saying I had to do better and how they just got on with things in his day. That was when I decided to tell him just how stressed I had been about Peyronies and the way it had affected my life. He simply said he had never asked in years because I never mentioned it.

Ironically he's been better since then and shows a bit more empathy. The affects of Peyronies can be psychologically hard to deal with. Some men become very depressed. In my case I've been depressed at times, but more frequently it has been frustration and serious anger. That's why you need to develop some techniques that will allow you to be kind to yourself and find some peace if you find it taking over.

I agree that it would be tricky sharing this with a friend, not least because you can never really tell how they might react or behave afterwards. This will sound daft to some, but I have sometimes thought Peyronies is worse than cancer in the respect that you just cannot talk about it in the same way. Perhaps I've shared too much information, but I think it helps sometimes if we can identify with the same frustrations, as long as you use it in a constructive way.

Regarding your questions, I would certainly put them to the forum. It might be better putting them in different categories, because I figure users will likely only read a post or two for a new user.

This is well said, probably speaks for a lot of us!  I told three friends and two of them kinda dismissed it.  So I just speak to the one I know since second grade.  He’s always curious and asks a ton of questions.   It’s extremely frustrating, you don’t know what’s gonna happen next.  My biggest fear.

This is my 9th month and I had sex for the first time since being diagnosed in July and the whole time my mind was just on being careful and never letting her on top.  Too much fear!
Logged
Age 46
No injury
Diagnosis January 2022  
Have plaque
Hourglassing when flaccid and semi-erect
Still have my congenital curve, no severe curving
Massaging with vitamin E cream twice a day 
Low carb diet
Discomfort/aching sometimes
Best to all!

fartoolong

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Re: New user, disheartened… [thread continued]
« Reply #5 on: August 31, 2022, 04:50:41 AM »

I should have added in my last post for Legacy that if you are strong enough to have made it through Leukemia and chemo I reckon you have proved you have the mental strength needed to face Peyronies as well.
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54 years old. First developed Peyronie's in 2012. Tried all the usual treatments without success and generally only got worse. Seeing improvement following a move to a raw whole food plant based diet, plus flax seeds & lots of water in summer of 2022

Legacy

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Re: New user, disheartened… [thread continued]
« Reply #6 on: August 31, 2022, 09:54:14 AM »

I should have added in my last post for Legacy that if you are strong enough to have made it through Leukemia and chemo I reckon you have proved you have the mental strength needed to face Peyronies as well.

Thanks, I must admit I went through it like superman, but this condition had me down all last week :(
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Sexual injury July 21. Painful erections, diagnosed Peyronies. Only just noticed the deformation, no proper growth in the 3rd of erection, no bend, proper erection though,
60, single, minimal sexual activity. Can live without sex, but…

Legacy

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Re: New user, disheartened… [thread continued]
« Reply #7 on: August 31, 2022, 09:56:25 AM »

Just want to say to the MOD’s, I don’t think Erectile Dysfunction is the right forum for this/me? My issue is with my erect penis.
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Sexual injury July 21. Painful erections, diagnosed Peyronies. Only just noticed the deformation, no proper growth in the 3rd of erection, no bend, proper erection though,
60, single, minimal sexual activity. Can live without sex, but…

Bud luck

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Re: New user, disheartened… [thread continued]
« Reply #8 on: August 31, 2022, 03:40:48 PM »

FranckPD, if your "deformity" is stabilize I would recommend you to not do "therapies" like any injections of any kind, Shockwave, Traction, VED. I'm speaking base of my personal experience, I tried everything and made it worse every time, now is too late to fix my mistakes.
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My first symptoms started early in 2019
I tried Traction device, Pentofixiline, Q10, TRT, L-Argenine, cialis
I have narrowing/dent/hinge on the left side of my shaft
My Erectile Dysfunction is getting worse
Had a PRP shot Aug 2021
I have a girlfriend
Age 46

FrankPD

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Re: New user, disheartened… [thread continued]
« Reply #9 on: September 01, 2022, 12:12:30 AM »

FranckPD, if your "deformity" is stabilize I would recommend you to not do "therapies" like any injections of any kind, Shockwave, Traction, VED. I'm speaking base of my personal experience, I tried everything and made it worse every time, now is too late to fix my mistakes.

Bad Luck,

I believe you responded to one of my post about shockwave when my second opinion uro suggested it.  I didn’t do it.  Thanks!

I’m at a point where I’m afraid to try anything in fear of making it worse.  I was gonna try manual stretching but decided to hold off.  My condition has basically stayed the same for the last six months.  It only changed the first three months.  I do feel my erections aren’t has strong.

How do I even know if it’s stabilized? 

Best to all.
Logged
Age 46
No injury
Diagnosis January 2022  
Have plaque
Hourglassing when flaccid and semi-erect
Still have my congenital curve, no severe curving
Massaging with vitamin E cream twice a day 
Low carb diet
Discomfort/aching sometimes
Best to all!

Legacy

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Re: New user, disheartened… [thread continued]
« Reply #10 on: September 05, 2022, 10:43:59 AM »

I’m still a bit confused, how do I tell what stage I am at? What’s the difference between plaque and calcification?

My pain has subsided, and my penis is deformed, but the lump feels the same when flaccid as has done the whole way through.

I also want to say that I’m feeling kinda mentally disconnected from my penis, I’m not really interested in it sexually, does that sound odd, or quite a common feeling? As I’ve said before, I’m able to go without sex due to loss of libido due to chemo, although I’m trying to address this via a ‘men’s heath’ clinic.
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Sexual injury July 21. Painful erections, diagnosed Peyronies. Only just noticed the deformation, no proper growth in the 3rd of erection, no bend, proper erection though,
60, single, minimal sexual activity. Can live without sex, but…

Hawk

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Re: New user, disheartened… [thread continued]
« Reply #11 on: September 06, 2022, 10:26:06 AM »

Indications you are in acute flair-up buy either one or two or both:
1. Pain
2. Progressive deformity determined by objective strict measurement of length, girth, and curve.
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Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Legacy

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Re: New user, disheartened… [thread continued]
« Reply #12 on: September 06, 2022, 10:37:49 AM »

Thanks for your reply,

What should I be expecting as time goes on?

I’m guessing that this forum is visited by a minute percentage of people suffering from this disease, as it seems it might be more common than I thought, in older males anyway.

I say this as somebody I’ve been chatting to online said her ex BF had been diagnosed with it recently, with similar deformities to me, and another girl spoke of deformities in a recent partner, which sounded to me like Peyronie’s?
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Sexual injury July 21. Painful erections, diagnosed Peyronies. Only just noticed the deformation, no proper growth in the 3rd of erection, no bend, proper erection though,
60, single, minimal sexual activity. Can live without sex, but…

FrankPD

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Re: New user, disheartened… [thread continued]
« Reply #13 on: September 06, 2022, 11:07:39 PM »

FranckPD, if your "deformity" is stabilize I would recommend you to not do "therapies" like any injections of any kind, Shockwave, Traction, VED. I'm speaking base of my personal experience, I tried everything and made it worse every time, now is too late to fix my mistakes.

Had my 9 month follow up today with the uro who first diagnosed me.  He said it’s stabilized and I shouldn’t try any stretching, etc.  He also said I should take 2000 IU of vitamin D a day, currently taking 1000.  I asked about it because there’s been a few mentions about it on here.  He said “it can actually help.” 

Good luck to all!
Logged
Age 46
No injury
Diagnosis January 2022  
Have plaque
Hourglassing when flaccid and semi-erect
Still have my congenital curve, no severe curving
Massaging with vitamin E cream twice a day 
Low carb diet
Discomfort/aching sometimes
Best to all!

Hawk

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Re: New user, disheartened… [thread continued]
« Reply #14 on: September 20, 2022, 10:02:16 PM »

It can't hurt and unless you get a lot of full-body sun at noon 2000 IU is a light dose.  My wife and I usually take 6000 IU
Logged
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums
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