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Author Topic: Is there anything left to try?  (Read 3104 times)

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popopo

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Is there anything left to try?
« on: September 14, 2015, 07:55:47 AM »

Hello people,

I've been looking around this forum for a long time now and I've found a lot of helpfull information here. My peyronie's disease started about three years ago and it's still progressing (on and off).

I'm 21 years old right now and it all started when I was about 16/17 years old. I wanted to increase the size of my penis by jelqing, pumping and clamping. I think mainly the clamping made de most damage. For a long time I saw hardly any increase in size (maybe just a little in girth) but slowly my penis started to turn a darker shade wich is supposed to be just a little side effect according to those penis enlargement sites.

Well.. I know better now. Eventually my penis started to hurt and the outside of my penis started to feel harder and veiny. In the beginning I was actually thinking that the exercises where growing me, but slowly a curve started to happen in the months that followed. I STOPPED the exercises before any significant change in size/shape was present, but it seemed to be too late since it still progressed over time.

I become more depressed with myself and my body than I allready was. I went to the doctor and urologist and they didn't seem to care much about the scar tissue in my penis. I never had a scan done but my urologist said he felt the scar tissue but it wouldn't get worse according to him and it was just scarring from the damage I did so no "real" peyronies disease according to him.

Turns out he wasn't right. I allready knew something was up so I begged him to put me on cialis and pentox even though it wouldn't help according to him. I still feel better doing something instead of just waiting. Unfortunately the pentox didn't do much except for minimizing the "hard flaccid" symptom I got.

Well fast forward to now. I'm still depressed and diagnosed with body dismorphic disorder wich I won't go into theraphy for (I tried believe me) since I just won't accept and this and deal with a "psychological problem" while my penis is still shrinking. It seems like I've been switching from acute to chronc fase in the last years. Right now I'm fighting the disease with all I got.

My list of medications and supplements:
Pentox 400 mg a day (before bed because my doc won't let me use any more)
Cialis 2,5 mg a day (before bed)
Vitamin d supplement
Acetyl L carnitine (I've only bought one bottle and it doesn't do much I think.. not sure.. I don't have enough money to buy more though)
Testosterone + HCG (200 mg a week + 500 iu a week) + low dose aromasin

I also have a VED, but for some reason the VED made me worse.. I actually suspect that one of the plaque's I have is actually caused by the VED device. since using the VED for some reason I have a very pronounced vein in my penis wich wasn't noticeable before.

I'm throwing everything I got at this disease and I literally have nothing to lose right now. My doc said TRT wasn't a good idea, and it's all in my head. But before TRT my levels where under 500 ng/dl wich isn't optimal in my sitaution. I'm sick of fighting with my doctor about what I should and shouldn't do. I actually feel bad for wasting time in theraphy since I feel like solving my problems will help me more than accepting that my sex life is over. I simply CAN'T accept this.

By the way I have scar tissue running along the left side of my shaft. It started small and caused a bent to the left. Now I also have a dent in the underside of my penis close to the glans (This makes achieving an orgasm a lot harder) and also a dent in the right side near the glans. I think it's hard to explain but it kinda looks like an hourglass/bottleneck at the end of my penis.. the loss of sensation makes matter worse.

I hope any of the things I'm doing will help me heal, but so far no change. I think my next step will be HGH. I allways wanted to be ripped anyway so even if it doesn't work at least it could make me stronger. I'm also not worried about side effects anymore because I allready decided that I'll either get rid of this disease and at least have normal sex again (something I didn't get when I was younger, but IS available now that I'm NOT able to do it) or kill myself. I've allways had problems with masculinity and all that.. To me this is too much of a burden to carry if this goes on and on and on till I'll resemble a little baby.

Anybody got any suggestions? Doesn't matter what as long as it helps. I'll cut of my f'^+'ing finger and shove it up my arse if it would help any.
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Sta

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Re: Is there anything left to try?
« Reply #1 on: September 14, 2015, 12:20:38 PM »

Hey there!

First, you are not alone. Life is not over.

My personal suggetion would be
1. to give up spending money for all rubbish you did before. In the first place. Especially hormones.

2. Are you getting erection? IF yes live it as it is for a month to see what is going to be. NO MECHANICAL stress allowed. No tossing, playing around, checking how good it is. If you getting night woods that is fine but do not do any more stress to it.

3. If you really ready to invest whatever it takes - you need to start meditate to cool down nervous arousal that fires inflammation. It may mean for you (as it did for me) up to 1-3 hours EVERY day but it is worth it. Any kind of attention focused meditation will work, but watch your wallet.


It is hard to understand from your post how bad your deformation though. IF it is you OK to perform yet frow in all resources into item 3.

Good luck!
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popopo

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Re: Is there anything left to try?
« Reply #2 on: September 14, 2015, 03:12:22 PM »

Hey Sta,

Thanks for the reply. Right now I lost about 2cm in lenght and on girth I'm not so sure since it really depends where on my shaft I measure. right around the glans my penis has thinned. It started on the right side and eventually it went all the around the underside up to the left side.

My main concern is that my penis is so fragile and I lost feeling. The stinging feeling and the decrease in size seem to switch, but all in it just keeps progressing no matter if I use a VED or abstain from masturbation. I tried both approaches, but it just has a life on it's own.

Also, the reason I'm doing TRT is because I'm pretty sure I'll need it anyway when I'm older. My levels are under 500 ng/dl and since low testosterone is a risk factor for peyronies (also because of a lot of other stuff like mood and strenght) I'll be able to take the risk.

I don't know if I'm wasting my money or not, but what's the alternative? There is none. I got nothing else to spend my money on anyway. If I don't do anything I'll probably just spend my money on weed because there is little else I can enjoy now that sex is nothing more than a humiliating experience for me.

I also realize that I should probably calm down and I'm trying to. I do have other activities in life (wich I don't enjoy that much anymore but I do it anyway) and I try to focus on other things, but as I'm only 21 and I feel like I've been missing out on sexual experiences for years, I just want to get my dick back so I can finally use it on all those girls that never wanted me, but now do (until they go to bed with me).

Also, do you reall think that resting my penis is better than keeping the blood flowing down there? I hear mixed opinions about this and honestly I don't know what to do anymore so I just keep masterbating simply because it takes less discipline than abstinence and abstinence didn't work for me when I tried it (only for a month though).
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Sta

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Re: Is there anything left to try?
« Reply #3 on: September 14, 2015, 04:33:25 PM »

Thanks for the reply. Right now I lost about 2cm in lenght and on girth I'm not so sure since it really depends where on my shaft I measure. right around the glans my penis has thinned. It started on the right side and eventually it went all the around the underside up to the left side.
 and strenght)

I lost about 3  cm over 2,5 years. Past that it seems more or less stable in length. I also experienced approx. what you are describing. Sometimes people even think they are getting better as curvature angle decreases but in reality the plaque grows through the over side and thus angle gets less obvious. With the price of girth indeed...Though very often it is falsely concluded as if some medicine helps.

Quote
My main concern is that my penis is so fragile and I lost feeling. The stinging feeling and the decrease in size seem to switch, but all in it just keeps progressing no matter if I use a VED or abstain from masturbation. I tried both approaches, but it just has a life on it's own.

I am not sure I fully understand what you mean. In my personal opinion in true Peyronies Disease VED is really bad option. Though some people say it helped them...What rest helps I am sure. So I am that it takes time to work.

Quote
My levels are under 500 ng/dl and since low testosterone is a risk factor for peyronies (also because of a lot of other stuff like mood and strenght) I'll be able to take the risk.

Testosterone is a tricky stuff...It may get low as soon as you worry about something. I bet you worry about your conditions. I did not find in recent publication that there is A DEFINITE link between low T and Peyronies Disease. Smoking, Alcohol may effect too T level too. On the pther hand Inaccurate intake of T may provoke cancer development and a lot of other nice side effect.


Quote
  now that sex is nothing more than a humiliating experience for me.

Not true. In Russia there is a joke "Woman is a very difficult instrument one can't play full party just with fiddle bow". I got Peyronies Disease in 26 (I am 30 now). I can understand you feeling and despair. You just need to find your way over over it. No one can do it for you. I can just say in a try to support you that there is always a way. See item 3 I provided. It helps.

Quote
I also realize that I should probably calm down and I'm trying to.

Item 3 ;)

Quote
Also, do you reall think that resting my penis is better than keeping the blood flowing down there?

It works for me.

Quote
I hear mixed opinions about this and honestly I don't know what to do anymore so I just keep masterbating simply because it takes less discipline than abstinence and abstinence didn't work for me when I tried it (only for a month though).

Irony is no one knows for sure. So I bet for 1 months may be not enough. I also doubt you REALLY kept on for a moth. That is very hard. The sense is not just mechanical calmness (which is IMHO very healthy on its own)but also that frequent ejaculation realy srews up you dopamine system and disturb regulatory systems.

Quote
so, do you reall think that resting my penis is better than keeping the blood flowing down there?

I do. Important thing to understand it is not just penis desiase. It is failure of regulatory system. This is good article if you want more details http://onlinelibrary.wiley.com/doi/10.1111/exd.12798/full

 That is why I advice for meditation/relaxation techniques used.

Good luck!




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LWillisjr

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Re: Is there anything left to try?
« Reply #4 on: September 20, 2015, 05:27:59 PM »

popopo,

You never really state what your symptoms are other than some pain/loss of feeling. Of which neither might be peyronies disease. Could be a pinched nerve issue. It is important you find out for sure what you do have as you could be chasing Peyronies disease for the wrong reason.

Can you get an erection? Do you have deformity or curvature once erect? can you achieve orgasm?
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Les - 10 yrs Peyronies Disease free
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TheE

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Re: Is there anything left to try?
« Reply #5 on: November 17, 2015, 04:09:14 PM »

I am experiencing the same symptoms as you except the plaque started on the left moving to the right causing wasting/hourglass just under the head. I feel that abstaining helps if not at least it takes my mind off and helps calm my mental state. I'm eating healthy, exercising, sex once a week/two weeks. supplements: L-arginine 1-2 grams, co-q10, magnesium, omega 3-6-9 and occasionally acetyl-l-carnitine with alpha lipoic acid, though I find these two quite strong. All I can say is you're not alone and I agree with Sta. Life's not over, peace from the UK.
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james1947

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Re: Is there anything left to try?
« Reply #6 on: November 27, 2015, 07:04:16 PM »

VED eliminated my three hourglasses.
The sentence above is just what happened to me, not advice for using VED

James
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krazylord

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Re: Is there anything left to try?
« Reply #7 on: December 22, 2015, 01:31:43 AM »

Hi James,

Could you please explain what kind of hourglasses did you have and how did they started to fade away using VED?

My hourglass is just present on flaccid/semi-rigid, but it goes away when I am erect. Did this happen to you as well? And even if yours was also erect, do you think hourglass is mainly tunica damage, or also corpus cavernosum damage? I am saying this because I had a doppler ultrasound and they said I have very mild fibrosis, if any, but just at the base, which is not where I have my hourglass, so my suspicion is that my issue might be more in the tunica.

Thanks a lot for taking your time on this. This is so important to me, and seeing somebody that fixed it gives me hope.

Thanks!
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james1947

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Re: Is there anything left to try?
« Reply #8 on: December 24, 2015, 02:27:06 AM »

krazylord

I am rarely on the forum and usually reading my PM's this is the reason of the delay in the answer.
I had hourglasses when semi erect and erect. Didn't notice them when flaccid.
I don't know what is causing the hourglasses, is like a hole bellow them, some soft tissue maybe?
VED, Pentox, low dose Cialis eliminated them. I think mainly VED has done the work, but I am sure Pentox and low dose Cialis softened my plaques.
But no improvement in erection quality or bed/curve.

James
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krazylord

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Re: Is there anything left to try?
« Reply #9 on: December 24, 2015, 02:43:27 AM »

Hi James,

No problem! Thanks for the answer, I really appreciate it. I am on daily Cialis and pentox right now, and expect to be for the whole next year.

I am going soon to see Dr. Lander. He also agreed that VED can help and that stem cell can also help. We'll see.

Thanks a lot again, and glad you at least got that hourglass to fade away.
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