Very bad situation

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JS1991

Once again, for a lack of hope and statements of suicidal thoughts I provide the following opinions: I seriously think it might be CPPS; hard flaccid and sensation loss (specifically cs and glans) are hallmarks of this condition. And once again, consider stem cell treatment if you are that desperate. I am nowhere near as desperate and I am going through with it.

sonnyjim, I'm glad you are at least trying the Pentox out. Good luck!
Do your homework before attempting a prolonged fast. JS1991 Timeline - Peyronies Society Forums (updated)

sonnyjim

Could pentox improve my ED at all though? I haven't read much about that. The two biggest problems are the shrinkage (more so when flaccid) and the ED.

What can pentox do for me?
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

suicidecomingsoon

no more than cialis or viagra really

JS1991

I personally got hard flaccid symptoms less often, allowing me to apply traction more often. My penis just felt softer overall, which makes sense due to the function of pentox: it thins the blood out, allowing it to reach smaller capillaries and provide better blood flow. Will this cure you? I don't know. But it seems to be a logical option. At the very least, these plaques you believe you have will progress no further than they already have.
Do your homework before attempting a prolonged fast. JS1991 Timeline - Peyronies Society Forums (updated)

sonnyjim

I don't think it would matter that much if they did get worse at this stage because I have zero function anyway. No semis no erections just a permanently turtled flaccid way smaller than what it used to be...

I just want my size back to how it was I could deal with the ED (not forever obviously) but it is psychologically hard knowing you are walking around with a tiny dick as well.

Wtf man.  
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

gigikious

I had a stage surgery for congenital curvature combined with egydio grafting after i also got peyronies.
Sadly the stage failed and my penis has  again the downward curve as it were before.
I was using VED and tracktion device daily for 7 months post surgery and had almost the same ED problems like yours.
I was  so depressed(still am) angry and suicidal thinking all the time that i've been deceived by my dr. and destroyed my dick.
I stopped VED about a month ago and while my penis is fully curved my ED  thankfully is almost gone.
Dont give up keep excercising daily and eat heathly you're both too young 23 & 29 and your ED might get better.
Im not trying to give u false hopes but in my case my psychology was only making things worse.Stay strong



Quote from: sonnyjim on May 16, 2018, 12:40:32 PM
Also what is causing my penis to hang so turtled and lifeless? I swear I've gone from like 4.5 inches pretty thick to like barely 3.5 inches and thin and lifeless.

What the F^@% ?

Has anyone ever got somewhat back to normal?

gigikious

Let me add that bad erections made my dick to also look so tiny,but now that erection is improved i think it has the almost same size as before.I'll keep using tracktion device 2hourz daily

kusher

For how long did u the have ed? After how much time did it disappear?  
Please go to PROFILE then FORUM PROFILE to replace this signature line text with your profile info such as age, date of onset, symptoms, treatments tried, etc

cheeznips

Man im so F^@$!ng worried that i tore my urethra from my last injury. My urethra feels completely dead like the skin feels dead. My appointment is in june 6th. If anyone wants to talk about this voip let me know.

gigikious

I had it for 3 months.Now i'm heading to the 8th month post surgery and it almost disappeared.I think VED was making it worse so i only use the traction device.
I hope you will also get better!


.
Quote from: kusher on June 01, 2018, 09:11:18 PM
For how long did u the have ed? After how much time did it disappear?

cheeznips

is anyone down all the time? i don't know if it's because my brain isn't releasing dopamine or something but i am always feeling down.

Werther

What kind of answers are these? If you don't suffer from particular conditions it's pretty likely going to be what you've already answered after your same question (a.k.a. clinical depression).

By the way I didn't know that sonnyjim's thread had become a place for everybody to vent out about every single problem one could have. Guess I'll have to use it like this too in the future...

cheeznips

i mean we all pretty much share similar symptoms and most of our peyronies probably started with penile fractures with some kind of damage to cc or cs.

TonySa

I think this thread has evolved into one where guys express their hopelessness which for some of us is so severe that it leads to suicidality.  It's so important to get mental health treatment then (or sooner) and not become another casualty of this disease.
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

sonnyjim

For me it's not even about suicide it isn't like I haven't tried everything I possibly can it's the fact I don't even know what is wrong with me and no urologists are helping me I feel like I'm just waiting around to die.

The lumps I have (which they are saying is not peyronies) have not shrunk at all only gotten bigger and my ED has only worsened to the point now where pills do not even work and they are still telling me it's psychological and think I'm making this crap up.

What kind of a retard would make up a year and a half of pain, ED and shrinkage ? It's F^@$!ng embarrassing. Psychologically the hardest thing I have ever dealt with and to be honest the loneliness is killing me, I have never felt so crap in my whole life and it looks like the whole situation is just hopeless.

What can actually be done to improve this? An implant? Nothing else works. This condition is F^@$!ng hopeless might as well just kill yourself really, all these things are just money making schemes NOTHING can actually help us were f'~c<+d.

Sorry but after a year and a half of desperation and hopelessness this is what I actually think.
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

cheeznips

yeah its pretty hard to keep it together. I Just got a job for an internship and i had a hard time keeping it together today. I have this constant feeling of wanting to touch the underside of my penis just to check in any nerves have came back, which they didn't. underside, urethra are completely numb. although, my erections are getting a lot better. numbness very much affects my psyche, and i have a baby on the way so that just add on my stress. I know if i just had my nerves everything in life would be 10x easier.

i also have a uro appointment to check to see if i have a stricture on Thursday. so that's nice to know.

PhotoBioModulationTherapy

Quote from: sonnyjim on June 06, 2018, 02:22:46 PM
How am I reading posts from people saying their scar tissue/plaques have disappeared after a few years if it doesn't really ever go away?

Does it eventually go away or is this it? And if it does, does that mean function returns as the scar tissue goes away ?

Plaque is a combination of scar and inflammed swollen tissues. The key to any inflammatory and slowing scarring disease is Suppress the inflammation ASAP. I have read way too much on these sites and the recommendations in the mainstream medicine about waiting 6 months since many patient's disease will stop progressing. Foolish thinking that has arisen out of little effective therapy in the past. I have jumped on my personally and recently diagnose-confirmed Peyronie's Disease is using my high intensity diffuse beam laser (980nm) called PhotoBioModulation Therapy. Here's my posting from earlier this evening as a newcomer to this forum and as a newly diagnosed patient but who is a laser surgeon of 35 years experience with medical laser. The key is early and aggressive anti inflammation treatment and figuring out the underlying cause of your penile trauma. I hope this opinion and personal opinion helps:

"PhotoBioModulation (Low Level Laser) Therapy is definitely working for my Peyronie's disease. At age 59, I started having painful erections 4 months ago and four weeks ago my wife first noticed a upward curve to my penis. Last week my PMD confirmed my self diagnosis that I had Peyronie's Disease with a slight palpable hardness, a developing plaque, just at the base of my Penis and just off to the left. Three(3) two(2) minute 50 watt diffused-beam 980nm laser treatments in the past four days has reduced my ejection pain by 50% and reduced the curvature by a small amount. I am from Green Bay, Wisconsin and will continue these high intensity laser treatments every other day and avoid intercourse for 6 full weeks to allow the laser therapy to suppress the chronic inflammation and to aid the inflamed/scarred tissue plaque to heal. Also, I will not allow my wife to rock on my penis any further as a foreplay method since I now realize, this pressure and rocking on my penis shaft, is likely the 'trauma source, that has triggered my particular case of Peyronie's Dosease for at least 6 weeks. As a laser surgeon of 35 years, I suspected this PhotoBioModulation therapy and treatment approach would work and I also realize this type of intervention is foreign to most lay people. I will also produce an erection twice a week during this six week treatment since it's logocal to try a bit to reduce the upward curve while receiving these treatments since whatever reversal on curve I can achieve will only be open to possibility during this important period of time during the suppression of the underlying inflammation and the healing of these inflamed-scarred-plaque tissues. This knowledge of treating inflammed and partially scarred tissues is no different than any other inflammatory disease the body. This posting is for those guys out there who have been recently diagnosed and I know the sooner one gets the inflammation under control and the traumatic source figured out and stopped, the less function and less chronic pain with erections you are likely to have. The research on PhotoBioModulation Therapy in treating and curing Peyronie's Disease is sparse but that's because of ignorance in my colleagues in mainstream  medicine who have been exhausted by the insurance companies to keep coverage for these cutting edge laser treatment modalities suppressed to avoid opening the expensive realm of having to start paying for laser therapy for the masses. I would be happy to communicate to any guy suffering from this disease via text messaging at 920-242-2541."

cheeznips

so i went to the urologist and he said he wants to do a systoscopy, retrograde urethrogram and a possible dviu if there are any strictures. he said i could of had a micro fracture in the injury, which possibly damaged the nerves, and even if i get rid of any stricture my feeling of my urethra and underside of my penis might not come back. im pretty scared. total will be 1800$ in the surgery center andif i only do the cystoscopy it will be $277 in clinic

cheeznips

sonnyjim

do you have any pain after erections or pain with erections?

sonnyjim

No, I did at first 1 1/2 years ago but it went away after about 6 months. All I have now is a permanently smaller dick and weird sensations when flaccid...

33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

cheeznips



do you have any problems when urinating? such as having to strain when you urinate? or any pain after you urinate?

sonnyjim

No...

Literally my penis feels like no feeling at all, I can squeeze it, pinch it, stretch it, it stays turtled with no pleasureable feeling. I cannot get an erection without 100mg Viagra and a lot of manual stimulation if I stop stimulation it goes down straight away. Never any spontaneous erections or semis anymore, never any morning wood and even when I am erect through manual stimulation I have basically no feeling of fullness it's hard to explain

My penis basically feels like a shrunken useless piece of rubber. I dunno if science can even help me at this point since I still don't know how it got this severe

I am struggling to hold it together as I have lost pretty much everything that made me happy. My gf, my dick, my self esteem, what I was, basically gone... It's like a bad dream that I cannot wake up from.
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

JS1991

sonnyjim, I came across this thread and thought of you. It is a thread on hard flaccid:

Link deleted by moderator! Read the forum rules!

The person who posted it has experience with a plethora of hard flaccid cases, and posted the following three reasons as most common causes:

1: Muscle tension (most common).

2: Circulation problems.

3: "Nerve damage... I would estimate no more than 10% of men have this kind of problem. That being said, nerve damage takes the longest to heal and is the most painful. Don't lose hope though, it can be overcome."

So again, it seems time will help. The person who posted this fixed his issue by water fasting for 7 days straight, which essentially reset his body. So, maybe it's worth a shot, given your desperation?

I might just buy Obitoo's stupid $40 "Hard Flaccid: Unraveled" book, which is essentially a collection of 90% of the information on the internet regarding hard flaccid boiled down into a book, and scour it for information for you on anything nerve-related. I can't stand seeing a fellow human suffer.
Do your homework before attempting a prolonged fast. JS1991 Timeline - Peyronies Society Forums (updated)

sonnyjim

Thanks for your advice JS.

I would love to believe that this is something like hard flaccid but I don't believe it is. I watched this get worse (ed, shrinkage, sensation) like my penis is rotting from the inside I guess.

I don't know what else to do now... 1 +1/2 years of dealing with this crap now I can't believe I will ever really be normal like I was.
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

cheeznips

yeah, i know the feeling. i feel the worst as soon as i wake up, i feel like complete crap because my penis is so numb. when i touch the underside of my penis it feels like i'm touching cardboard sometimes. its pretty depressing.

SofaKing

Sorry for resurrecting this thread but to the men suffering from ED that pills are not working for I implore you to give injections a serious try.  I to have injured my self with extreme penis pumping sessions and now I have a red wrinkly dick for two years now.  First pills worked then they started working infrequently.  If pills ever did work for you this may be a sign that you DO NOT have a veinious leak.  Injecting has been working good for me for the last 6 months.  Injecting at the doctors office is not a serious try because those injections are kinda weak and you are in a uncomfortable environment which you can not masturbate and even if you could it would not be pleasant.  A lot of men find that when they first inject it doesn't work.  They will keep increasing the dose until they achieve a decent erection.   At this point most of them start decreasing their dose because the injections suddenly start working.  Kinda like the first few times I smoked weed and didn't get high.  Onto the injection strengths....  the doctor for the Doppler will give you the weakest one.  The strengths are as follows....  Alprostadil < bimix < trimix < quadmix.  So Alprostadil has one ingredient and you can go up to 100 units in a shot, the doctor will only give you 20 units.  As for bimix it has two ingredients, trimix has 3, quadmix has 4.  The pharmacist can increase the amount of ingredients in said bimix/trimix/quadmix to make a even more potent version of the drug.  Please message me or write here if you need help obtaining these drugs.
Please replace this text with your profile info such as age, date of onset, symptoms, treatments tried, etc.

Pfract

This looks a bit odd for a first post...  

SofaKing

Sorry for it being a wall of text :/  I am a member to two other forums relating to ED and have suffered some major depression and anixity from it.  I have tried many things to combat my ED and want to share my story because I feel there are men out there that would benifit from it.
Please replace this text with your profile info such as age, date of onset, symptoms, treatments tried, etc.

JS1991

Two questions: Can you please explain in detail how your vaccum device habits and how you injured yourself using it?

Is it difficult to self-inject? I want to self-inject into my penis without training, how dangerous is this?
Do your homework before attempting a prolonged fast. JS1991 Timeline - Peyronies Society Forums (updated)

SofaKing

1
I went above 8 HG my electronic display said 35 HG.  I believe the 35 HG displayed may have been inaccurate after talking to a few guys about how fair their pumps pressure gauge goes and believe it actually to be in the 20s and still very high and dangerous.  I pumped regularly almost daily for 2 months and now my penis is considerably darker and theres alot more skin that looks like crepe paper.  I have had ED since pumping which has now been 2 years.

2
Injecting is easy, I lightly grab/pull the head of my penis to my upper inner thigh.  Then I inject in the side of my penis into the cavernosa.  It dosnt hurt much and my brain has associated any pain as a good thing and know a boner will soon happen.  please read/watch material on the internet for a full description if your not going to have a doctor train you.  The doctor will want to have you do the first injection in their office unless to lie and tell them you have done Alprostadil before but it is no longer working and you are looking for something stronger that your current urologist wont prescribe (this is what happened in my situation).  I actually did have a previous doctor who was only willing to prescribe Alprostadil (caverject brand name) which is the weakest and also the most expensive.  My new doctor who prescribed my trimix took my work that I allready tried Alprostadil and that I have had a penile doppler done, so you could probably just lie to your doctor instead of going through all the steps i went through

3
Learn about priapism and how to treat it.  Its common for it to happen to newbie injectors and if you have a erection lasting 4+ hours you are recommended to come to a hospital and have them pull the blood out of your penis with a 18 gauge syringe.  This actually dosnt hurt much, I dumb so I have had to do it twice.

4
Your first urologist might not prescribe bimix/trimix/quadmix.  Google local compounding pharmacys (compounding pharmacys make their own drugs unlike walgreens).  Get the number of a local compounding pharmacy and call them to ask which doctors/clinics do they supply their trimix drugs to.

Please replace this text with your profile info such as age, date of onset, symptoms, treatments tried, etc.