My Erectile Dysfunction diary... Thoughts, treatments, ramblings....

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Pfract

Hey guys. After so many years in this board i realized i never sort of hard a diary here, per se. I did vent out a couple of times, but never opened up a thread where i could post continuous updates about my condition/progress and what treatments and doctors i pursue with photos and documents to back up my statements; i think that in a forum like this, where people are in despair with their condition and fall prey to quack treatments and easy fixes, with scammers roaming around and guys making false and outrageous claims it is the way to go.

8th of august 2014
QuoteI had sex with a girl, and during intercourse i felt a sting on the penis. Went to sleep, didn't make much about. Had a slight discomfort sensation in the penis, but no pain. 12h later i woke up with a small hematoma, but no bruising on the right side of the penis. Went to the ER and i was told it was nothing. Ended up having a flaccid ultrasound that showed nothing, and then was sent home. Tried having intercourse 1 week later, and thats when my erection difficulties started.

29th of August 2014
QuoteFinally went to a urologist that diagnosed me with a small penile fracture, but said that it was too late for a repair. I had to let it heal now, and the damage was done. I ended up going to a lot of doctors in that time period for second opinions and they all agreed on the same thing. I was given Pentox to help with the treatment. My erections were super painful, but eventually stopped hurting. I was left with moderate E.D. I could not sustain my erection, but i could achieve one. Erection substantially improved with pills.


May 2015

QuoteI tried to have intercourse with a girl, and i was able to achieve and maintain an erection but it felt much weaker than previous ones. I did not take viagra, and ended up feeling my penis bending inside of her again since my erection was not rigid enough. That further worsened my Erectile Dysfunction, and my erections where not as solid as before.
Sometime around this month, i saw another Urologist in Portugal that listened to me and provided some support and guidance, but wasn't able to offer much help other than the usual. (injections, pills and or vacuum pump).

I also spoke on the phone with Dr. Irwin Goldstein (San Diego Sexual Medicine), who used to (and maybe still does today?) a surgery  that might help restore natural erections, in cases of penile trauma, or trauma in the perineum area. I promised to myself that i would make everything possible to go and see him when i had the money to.

June 2015
QuoteI was fed up with the Portuguese public health system, and given that i had family in Canada, i emigrated here. I worked non stop till February 2016 and i finally had the money to go and see Dr. Goldstein.

March 2016
QuoteI travelled from Toronto to San Diego, to see Dr. Goldstein and diagnose properly my condition. I spoke with her sexual therapist, and then had my consultation with him in the Office. I still remember to this day how amazing it feels to be properly listened to. Just wow.... I did not want to, but i ended up having an ultrasound diagnostic in his office. 950$ CAD out of my pocket for my consultation and ultrasound... Plus plane tickets.

Unfortunately his surgery wasn't for me, since i already had fibrosis in my penis. He recommended i tried injections or pills. I did asked for an implant there, but i was not too pleased with the answers i got, since it was from his assistant i got the answers and she said i would loose length and might have other issues and i was also too young.


January <-> September 2017
QuoteI saw two urologists in Canada. Dr. Greenspan in Hamilton. and Ethan Grober in Toronto. Both where a waste of time. At least Greenspan offered me a prescription for Cialis daily, which i take. Ethan grober didn't even wanted to listen to me properly and dismissed me almost instantly. Literally asked me "what did i want him to do for me....

August 2018
QuoteI was missing intimacy a lot after being alone with no sex since 2015, and after turning down a lof of girls i eventually caved in and went out for a couple of dates with a girl from my home town. During one of those dates and while we where making out... i had my penis erect in my pants, bent out to the left. She was moving a lot and i felt another slight sting in me penis. My Erectile Dysfunction further worsened, and i lost a little bit more length and gained slight curvature to the left. I totally avoided her, and other girls that approached me after that in anger in frustration.

September 2018
QuoteI managed to get an appointment with Dr. Gerald Brock, in London Ontario. He does implants as well, and is one of the few Canadian doctors in the area doing so. He did not want to do the implant on me, but he said i was very knowledgeable and he was impressed that i knew about restorex. He offered to give me a sample and also wanted to do a Ultrasound on me for further exploration, as well as he was going to email Dr. Irwin Goldstein to get all my documention from the 2016 visit as well as the exam report.

February 2019
QuoteI went back to St. Josephs hospital in London for an ultraosound but it did not go according to plan. I was there on time, at the correct location and floor but the assitant did not told me i needed to register so i was there for 1.5 hours waiting, seing patients go in and out till eventually there was no one there. She eventually called upstairs to the 4th Floor, and Dr. Gerald Brock was furious that i made him come down and gave me a huge reprimand. IU had a flaccid ultrasound which, surprise surpise, did not show anything. I did manage to get my Restorex sample that day finally. Sadly, i haven't had the courage to use it still due to concerns with my girth and clamping the device on the penile glans too much.
https://www.peyroniesforum.net/index.php/topic,11963.msg110947.html#msg110947

January 2019
QuoteI went back home to Portugal for vacation, after these 4.5 years of staying in Canada. There i ended up seeing a Urologist that also does Penile implants and is the closest thing there is there compared to the US in terms of treatment for Erectile Dysfunction. A private practice you can go to and get yourself a penile implant. It was a positive consultation and i got to know that it costs around 13.000 euros to do it out of pocket.
https://www.peyroniesforum.net/index.php/topic,13002.msg119280.html#msg119280

February 2020
QuoteI am currently back in Canada. Looking for another job, within my industry that pays more and allows me to travel and see Dr. Eid or Dr. Kramer. I am currently unsure of how to proceed, because i wanted Dr. Kramer to do my implant but from what i understood he does not do appointments before the procedure and trusts his patients to know about their condition and to have done all the tests before. Dr. Eid does have you do an ultrasound and cistoscopy before the procedure to check your urethra has no damage and that is something i would like to do, as i currently have my doubts about my condition. If all goes well, i will be able to see one of them this year and hopefully kick start my implant surgery plan phase.

Pfract

I figured i started with the diary... after plenty times thinking about it, but with no thoughts coming out... it's clear to see ED is taking it's toll on me mentally and i really need to reach out for help. thanks to the ones that read this, even tho i expect no answer in particular. Just venting out and putting my thoughts out there. I guess it felt somewhat good....

TDix

Thanks for the journal.  Mine are more like "chapters" in my life, so that's how I label them.  Seems you have seen a lot of doctors and done a bunch of traveling.  I hope you finally get the help you want and need.  If you ever find yourself in SoCal again, I would suggest Dr Yafi.  Wouldn't hurt to get yet another opinion and he is my go to andrologist.  Wish you luck man
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

Bananadude

Damn my story shares a lot of similarities...

Young and sexually/emotionally depraved... it sucks.

25 y old. Injury during sex 2014 and since then, an upwards bend, 20-35 degrees. Haven't tried more than occasional manual traction. Losing my mind.

hope794

You are a good man, pfract. You'll overcome this. I am really sorry and, since i'm not english mothertongue, i just can't find the right words to describe what i felt by reading this post. And probably i don't find the right words to tell you something really helpful; or maybe, i just can't.
Please keep us updated.
26 yo from Italy.
Peyronie's since abt 2014
Abt 20-25° bend, w/ a moderate twist to the left
ED for 4 years and getting worse
From pornstar-like to moderately depressed - still fighting for a solution.

Pfract

Thank you for the reply guys. I have to update this diary...  Got some, somewhat uplifting news....

Pfract

So.... after what was almost 1.5 months without saying anything.. i have some updates.. Since February 21st of this year, i have been talking with a girl that  i matched with on Tinder. A lot of video calls already and we met in person. Ended up spending the whole afternoon on the park in Toronto. Right before the quarentine started. I have been discussing with her a lot that i have something that might prevent intimacy between us, and if it does come to happen i am not sure how will it go or if it will be a deal breaker for her.

Meanwhile, she also has some secrets to share and she said she also spent a lot of time without intimacy and on a long distance relationship. She said she doesn't know what it is that i may have but she says she doesn't think it will be a problem.

So.... i don't know what to do here. Quarantine is in full force and i don't know how long i will be able to keep the steam going....But, if it works out i may have something with a new partner. She is not exactly the type of girl i normally look for, but she has some very nice things as a person and she is pretty too, so i am kind of tempted to give this a try.


TonySa

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.

Stepone

Pfract,

I think you are so brave to share your concerns with your new friend. We all have wounds, we all have scars, whether they are physical or emotional. The fact that you shared with her and she shared with you, seems to me to be a creation of a bond. I think it's a part of life when one person is able to share with others their own wounds, it will enable another person to share theirs and the bonding begins.
I think none of us ever truly finds what we think we are looking for....and I think some of us that are always looking for that perfect person, we will never find them.
I have friends in their 60's that never bonded with anyone. They bonded, but it was always with money or cars or drugs.
I think it's wonderful, if it works great, if not, you still have impacted someone in a very positive and caring way.
I say go for it and see where it goes. I admire your openness.
You have nothing to lose.
StepOne
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

samsung

45 y.o. Single. Onset of symptoms (pain-stinging like a wasp) @ 6/2018. No sudden injury. Curve developed slowly. 40 deg. dorsal. Hourglassing. Torsion to left flaccid. 4 rounds xiaflex. Restorex, DMSO+, heat, arginine, cialis, lipoic acid, vit. K2

jj21

Thanks for sharing Pfract. Good luck to you in your journey and remember to not give up!

I'm seeing improvement and results and I wish the same for you.

The combination of Pentox + Cialis daily (5mg per day) made a significant improvement to my ED, have you tried that? I also add 100mg Viagra in there before sex and I am able to have sex despite the curvature.

VED plus traction has been showing slow improvement for me too- have you tried it? Just have to go very slow and stay consistent.

Please give the girl a shot, she seems very genuine and understanding and I think it could be very good for your mental health if you are able to share a connection with her.

Keep us updated!

JJ

34 Years Old...Peyronies for 4 years. 20 Degree left and upwards curvature, major dents and narrowing, ED.

Implant + Tunica Expansion Procedure, 7th Feb 2023, Titan 22cm +1cm RTE, Partial revision 27th June 23 (fix pump, remove 10ml reservoir).

hope794

Dearest pfract,
i don't want to seem unpolite, but in Italy people say: "No man is over until he has a finger and a tongue! ;)"
That means that there's intimacy without penetration, if she's willing to have.

I know, it sucks and shouldn't be like that for youngsters like us, but that's it: better this kind of intimacy than nothing.

Cheers, a big hug.
26 yo from Italy.
Peyronie's since abt 2014
Abt 20-25° bend, w/ a moderate twist to the left
ED for 4 years and getting worse
From pornstar-like to moderately depressed - still fighting for a solution.

cdub

Pfract,

Hope you are doing well man and that you gave this girl a shot.  
Age: 43
Large Indentation 3/16/20, lead to Penile Microfracture on 6/26/21.  Still suffering from large indentation, some wasting on other side of penis and large nodule when erect in center of penis (dorsal). Penis is straight & erections are good

Pfract

Hey guys. Thanks for reaching back.... So... Another update on this. I still can't believe it... I spent the whole afternoon with her in Toronto yesterday. Conversation lead to caressing.... Then it lead to a few kisses on the cheek and then... We were making out for most of the afternoon till early evening... Things got pretty steamy in the car.... Hands all over the place.

I was trying not to freak out,everytime she came close to me. I asked her not to grind on me nor bump into my groin area. She kept pressing to know more and I eventually caved in as we were going back to her house. She ended up reassuring me that she was here for me and we spoke about my issue a little bit. She wasn't concerned but my paranoid mind tells me otherwise... Felt super exposed revealing for the first time to a girl in Canada about my situation. Like she can use that against me in the future....  Time will tell I'd say.


popopo

I'm glad for you, but also a little worried. I really hope she's worth it and won't hurt you. I personally chose to remain single and keep my secret to myself. I learned to accept not getting laid and not having a woman in my life as this situation would only hurt me more if I had to share it with a woman. I'm also, like you very afraid she will ridicule me or tell people about it or in any way use it against me. I would also be too scared to fall in love as I don't want to experience the highs and lows a lovelife gives me. But I'm a little odd anyway. I know myself and in a relationsship I get jealous, easily hurt and just plain vulberable. In an ideal world I would deal with this by being single and F^@$!ng many different women and not fall for one girl, but because of my penile problems I do not have this option so I protect myself by avoiding it altogether. I hope this all works out for you as I,'d hate to see someone else experience the thing I fear most.
Age: 25
Date of onset: 17
Symptoms: sharp pains, numbness, change in shape/size, hourglassing and discolaration from jelqing/VED usage as a teen. Diagnosed with a venous leak and possible scarring.
Treatments tried: cialis, pentox and VED didnt help

Stepone

Pfract,
My advice is don't change what you are doing.
This may turn into a wonderful relationship and become even brighter once you are able to get an implant.
Honesty is always best in any relationship, hiding only leads to more hiding. I admire your openness.
As I hope it certainly works out for you, she must think there is something in you besides sex, or she would have not been interested at all.
Please stop trying to second guess and use what she says as being truthful.
You could end up having the best relationship ever, because it will be based on truth, rather than lies.
I mean how many movies have you seen, how many relationships have you heard of, where people ended relationships based on lies, rather than the truth.
I wish you well, but even if it doesn't work out, be strong as you are a good man, and you were honest.
Best wishes,
StepOne
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

Pfract

Quote
I'm glad for you, but also a little worried. I really hope she's worth it and won't hurt you. I personally chose to remain single and keep my secret to myself. I learned to accept not getting laid and not having a woman in my life as this situation would only hurt me more if I had to share it with a woman. I'm also, like you very afraid she will ridicule me or tell people about it or in any way use it against me. I would also be too scared to fall in love as I don't want to experience the highs and lows a lovelife gives me. But I'm a little odd anyway. I know myself and in a relationsship I get jealous, easily hurt and just plain vulberable. In an ideal world I would deal with this by being single and F^@$!ng many different women and not fall for one girl, but because of my penile problems I do not have this option so I protect myself by avoiding it altogether. I hope this all works out for you as I,'d hate to see someone else experience the thing I fear most.
@popopo:
Man.. There are several things there which I understand but even as somebody that has been in love before, I'd say I have to write a long post to properly address some of the things you say there which I think are not true. I remember back in 2014 when I fractured my penis I went crazy thinking there was nothing else I could do and I fell into a huge depression pit. Even if you don't have sex, you can still kiss girls, you can still go out to the club and enjoy yourself, you can still talk and not isolate and meet new women. Yes, it will hurt thinking you couldn't properly have sex ''like before'' but trust me when I say you can do stuff. I've been there.


Quote
My advice is don't change what you are doing.
This may turn into a wonderful relationship and become even brighter once you are able to get an implant.
Honesty is always best in any relationship, hiding only leads to more hiding. I admire your openness.
As I hope it certainly works out for you, she must think there is something in you besides sex, or she would have not been interested at all.
Please stop trying to second guess and use what she says as being truthful.
You could end up having the best relationship ever, because it will be based on truth, rather than lies.
I mean how many movies have you seen, how many relationships have you heard of, where people ended relationships based on lies, rather than the truth.
I wish you well, but even if it doesn't work out, be strong as you are a good man, and you were honest.
Best wishes,
StepOne

@stepone:
Thank you for the kind words and support. I decided to try and do different since my mom basically told me I was complaining girls wouldn't accept my situation, but that I never actually tried to say that. It will be hard, but not impossible to have this turn into a relationship per se. A friends with benefits type of thing sounds super reasonable and respectful to me. I told her I didn't wanted to hurt her by promising the world and not being able to deliver, due to my predicament. That there was plenty that I could do even if penetrative sex will be different from what she is used to.

I also couldn't agree more with the honesty and sincerity part. That has been a mainstay in our interactions so far and it has been amazing. Not to mention I so missed the intimacy and just hugging and kissing for a couple of hours.

It felt bad because we are supposed to be staying home with all the covid virus, but both of us have no symptoms so we went for it.  8)  

popopo

Look Pfract, I'm really happy for you and truly hope it all works out for you and you can have nice relationsships again, but to me it's just not something I want anymore. I may have a very different viewpoint than most of you, but to me personally there's no fun in kissing, dating and all of that. Unless I can actually have the easy no strings attached many different women kind of sexlife I'd like there's no point in trying. All the other stuff will just be like a "tease" to me, but I'm pretty sure I can't find the satisfaction I want anymore. Maybe in some utopian future where my dick gets fixed and I relive my youth as an old man making up for lost years, but the way I'm now I'm glad to be alone. I miss sex, period. All the other stuff I really don't miss at all. I can hardly take care of myself let alone provide for a woman and possibly a kid in the future. I don't want all that and I realize deep down that truly isn't for me even if some of my instincts tell me otherwise. Lately I even sometimes look at young dad's and realize they have to deal with a nagging wife, screaming children, a mediocre sexlife and sometimes even a wife that kinda "uses" the male as a provider puts a grin on my face and makes me realize being alone isn't so bad. Maybe all of this is just a cope, but I really feel that way. I'm happy for you and hope it all works out, but I have a different view on life and being single for so long made me realize that I'm kind of an einzelganger/lone wolf and the only real reason this bothers me is cause I miss sex and also that I'm afraid of what other people might think about me not having sex/relationships. But none of these things really matter and in the end I really don't need it to life a good life. I deal with my sexual needs on my own with masturbation, I try to develop socially in other ways than trough dating and If I can just put the shame/insecurity towards other people aside I'm actually fine with that. Would I rather have a good sexlife? Yes. But that's really not an option in my case so at this point I just accept it and enjoy other area's of life.
TL;DR: I enjoy being single, I miss sex but it's difficult so I'd rather be alone and for now I'm fine with it.
Age: 25
Date of onset: 17
Symptoms: sharp pains, numbness, change in shape/size, hourglassing and discolaration from jelqing/VED usage as a teen. Diagnosed with a venous leak and possible scarring.
Treatments tried: cialis, pentox and VED didnt help

Pfract

Quote
Look Pfract, I'm really happy for you and truly hope it all works out for you and you can have nice relationsships again, but to me it's just not something I want anymore. I may have a very different viewpoint than most of you, but to me personally there's no fun in kissing, dating and all of that. Unless I can actually have the easy no strings attached many different women kind of sexlife I'd like there's no point in trying. All the other stuff will just be like a "tease" to me, but I'm pretty sure I can't find the satisfaction I want anymore. Maybe in some utopian future where my dick gets fixed and I relive my youth as an old man making up for lost years, but the way I'm now I'm glad to be alone. I miss sex, period. All the other stuff I really don't miss at all. I can hardly take care of myself let alone provide for a woman and possibly a kid in the future. I don't want all that and I realize deep down that truly isn't for me even if some of my instincts tell me otherwise. Lately I even sometimes look at young dad's and realize they have to deal with a nagging wife, screaming children, a mediocre sexlife and sometimes even a wife that kinda "uses" the male as a provider puts a grin on my face and makes me realize being alone isn't so bad. Maybe all of this is just a cope, but I really feel that way. I'm happy for you and hope it all works out, but I have a different view on life and being single for so long made me realize that I'm kind of an einzelganger/lone wolf and the only real reason this bothers me is cause I miss sex and also that I'm afraid of what other people might think about me not having sex/relationships. But none of these things really matter and in the end I really don't need it to life a good life. I deal with my sexual needs on my own with masturbation, I try to develop socially in other ways than trough dating and If I can just put the shame/insecurity towards other people aside I'm actually fine with that. Would I rather have a good sexlife? Yes. But that's really not an option in my case so at this point I just accept it and enjoy other area's of life.
TL;DR: I enjoy being single, I miss sex but it's difficult so I'd rather be alone and for now I'm fine with it.

You are doing exactly what i did after my fracture. You might say it's BS, but it's not. You can still have no strings attached even though sex might be different. That's exactly the predicament i am right now with this girl. What you are not realizing is the emotional toll the lack of intimacy and female contact is/will have on you as times goes by.

Also, how can you possibly know how somebody else's sex life is without being in their bedroom? senseless preconceived notion. Unless you read up on this, on places like reddit, on the appropriate subs, then it isn't more than you being delusional on these things. Kind of what it feels comfortable for you to think about so you cope with it.

You know what you may benefit from? Psychotherapy. It would be great for you when this corona virus thing ends.. And no, don't get all offended because i am not attacking you. Just really trying to tell you, that your point of view doesn't make sense in the greater scheme of things. I went from being in a serious long term relationship for 6 years.... 17 till 23... Became a big player, had several friends with benefits going on at the same time. till disgrace struck me and i broke my penis, and was left with Erectile Dysfunction and been doing everything to battle it.

listen to me.

popopo

Theraphy is a joke. Been there done that. Still in the withdrawal process of getting off the toxins these "specialists" gave me. They knew I had sexual problems yet both these drugs cause sexual problems. I also had elevated liver enzymes in the past. Both these drugs cause liver damage. Plus they made me fat. I also found out I have low testosterone, but got refused to get treatment for it and they kept telling me to just accept it. I did not now here I am fixing these issues on my own feeling better for the last months then I ever dit working with the therapists. Funny, right? And no, I'm not gonna act offended. I'd rather just ignore the fact you call me delusional and tell me I need theraphy like I'm some crazy person. But I'm sure you mean well, it's just not helpfull at all. You do you, my friend. Let me do me, ok? And if I sound negative I don't mean it that way. I'm just being real. I feel like I'm less delusional than you actually, but let's just agree to disagree. And honestly my tone on this forum is a bit dimmer than in real life because in real life I don't talk about this anymore. No use anyway.. here I vent my frustration, because it annoys me that there's no change/development in treatment at all yet many of you act like there SO MUCH you can do about it and so far none of it is helping. I only come here now for the occasional rant and maybe some information about future treatments, but I'm slowly giving up on that as well. So like I said, I'll just accept being alone for now while I do everything I can to fix this.
Age: 25
Date of onset: 17
Symptoms: sharp pains, numbness, change in shape/size, hourglassing and discolaration from jelqing/VED usage as a teen. Diagnosed with a venous leak and possible scarring.
Treatments tried: cialis, pentox and VED didnt help

Pfract

Quote
Theraphy is a joke. Been there done that. Still in the withdrawal process of getting off the toxins these "specialists" gave me. They knew I had sexual problems yet both these drugs cause sexual problems. I also had elevated liver enzymes in the past. Both these drugs cause liver damage. Plus they made me fat. I also found out I have low testosterone, but got refused to get treatment for it and they kept telling me to just accept it. I did not now here I am fixing these issues on my own feeling better for the last months then I ever dit working with the therapists. Funny, right?

therapy is not a joke. Nobody said you needed to be on benzo's. Talking to a psychologist for a few sessions, to vent out, to debate your traumas and fears can be something very good and allow you to see that you are wrong in certain subjects. Also, if you are prescribed those medications, it's because the therapist believed the risk benefit was worth it. All drugs have side effects. Even cialis and pentox recommended here, as you may have read?
As for making you fat, yes, they don't help at all. But what doesn't help at all is that most people that go on those drugs have zero knowledge of nutrition and just eat away like normally, let alone exercise. Did you take that into consideration while on them?
    Also, tell me which urologist refused helping you out because you were low on testosterone? on what basis? did you had blood work done? When? Did you went for a second opinion since you where so sure you had low t?

QuoteAnd no, I'm not gonna act offended. I'd rather just ignore the fact you call me delusional and tell me I need theraphy like I'm some crazy person. But I'm sure you mean well, it's just not helpfull at all. You do you, my friend. Let me do me, ok? And if I sound negative I don't mean it that way. I'm just being real. I feel like I'm less delusional than you actually, but let's just agree to disagree.

I did not say you are delusional. Let alone crazy. What you are doing? not listening and in denial. You are believing so strongly in your ideas that you are not even listening to anyone. You give me zero credit for what i am trying to tell you. And listen, i totally understand if it was somebody in his 60's or 70's trying to tell you to just relax and open up with somebody that you barely knew, because that person has been married for age's and trusts his partner.
    Except it's not the case. I am not much older than you, AND I HAD EXACTLY the lifestyle you say you wanted to have if your penis wasn't damaged. Clubbing.... different girls every weekend.. no strings attached sex. I told you i shared your views when i joined the board years ago and i slowly changed throughout time. But it wasn't overnight. Initially i didn't wanted to hear others as well, and it definitely helped when more young people started joining the boards with ED.  You really have to stop being stubborn and ask yourself "am i so right here? isn't there really another way? have i really tried to know for sure? there are people saying otherwise..... i think it's BS... but have i actually tried to do what they are saying, so i could validate or not their ideas?"


QuoteAnd honestly my tone on this forum is a bit dimmer than in real life because in real life I don't talk about this anymore. No use anyway.. here I vent my frustration, because it annoys me that there's no change/development in treatment at all yet many of you act like there SO MUCH you can do about it and so far none of it is helping. I only come here now for the occasional rant and maybe some information about future treatments, but I'm slowly giving up on that as well. So like I said, I'll just accept being alone for now while I do everything I can to fix this.

If there is no treatment that can help you, then why bother? just enjoy life playing cards at home, and browsing netflix totally forgetting about your issue.

Just as a curiosity, have you read the guidelines from the two major urological associations on Peyronies disease? (AUA and EUA?) https://www.auanet.org/guidelines/ https://uroweb.org/guidelines/ ?

jj21

Any update Pfract?

Have you tried the Cialis Daily plus pentox plus 100mg Viag before sex/masturbation combination ?
34 Years Old...Peyronies for 4 years. 20 Degree left and upwards curvature, major dents and narrowing, ED.

Implant + Tunica Expansion Procedure, 7th Feb 2023, Titan 22cm +1cm RTE, Partial revision 27th June 23 (fix pump, remove 10ml reservoir).

Pfract

Quote from: jj21 on May 28, 2020, 08:20:32 AM
Any update Pfract?

Have you tried the Cialis Daily plus pentox plus 100mg Viag before sex/masturbation combination ?

I don't think i would be able to try such a thing man... Have you tried it? how did it feel for you? blood pressure wise?

As for how it is working with this girl, we are still together. We spend every sunday together, for the whole afternoon. No sex attempt yet... but we kiss a lot and exchange a lot of affection in the process. Work in progress i'd say.....

jj21

Man i'm glad you're able to have some kind of relationship with a girl and that she is understanding to your condition.

I have done the pentox plus cial daily plus 100mg viag pre-sex.. It does work really well for me. Without the viagra I would have an okay erection but would still have hinge points and would not be riggid. Maybe try 50mg to start with and give it 40 minutes and see how that goes.

I remember before going on cial daily and pentox I pretty much could only keep it up if constantly stimulated and had a soft erection so penetration or even oral was very difficult. After Cial daily and adding viagra before sex I could have a somewhat normal sex life.

I definitely recommend jus trying it at home start with 50mg and see if your erection is a bit more riggid. This really helped with my mental health as I was able to resume a somewhat normal sex life.

I know they usually say not to mix Cialis and Viagra together but they are usually referring to the 20mg as needed dosage of Cialis.  
34 Years Old...Peyronies for 4 years. 20 Degree left and upwards curvature, major dents and narrowing, ED.

Implant + Tunica Expansion Procedure, 7th Feb 2023, Titan 22cm +1cm RTE, Partial revision 27th June 23 (fix pump, remove 10ml reservoir).

Pfract

Yes... I was together with her on Sunday... We pretty much are always together every weekend. I ended up masturbating here on the back seat of the car. She wanted to do the same but doesn't feel too comfortable in public.

Going to see how this goes once this covid thing eases up and I may end up going to a motel.

To make things clear. You are talking, to mix:

Daily cialis 5mg With 100mg Viagra on demand once before sex?  

TonySa

Hi guy, I'm so happy for you that you found the right combo of meds that treats your Erectile Dysfunction. I just posted an article where aspirin w cialis can help Erectile Dysfunction.  Since both pentox and aspirin thin the blood I'm wondering if that's why pentox has helped you so much.  If so, aspirin might be a cheaper option than pentox.  I'm also confused why you're trying restorex, I thought it was only to treat Peyronie's rather than Erectile Dysfunction. Anyway, since the meds are working it looks like you can avoid surgery or an implant for many years!  Thanks for this great diary, it will give many w ED hope.
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.

jj21

Pfract - Basically just continue with the Cialis daily 5mg as normal and add 100mg Viagra 40 mins before sex... You could test it out before you see her, try 50 mg at home to start and give it 40 - 60 mins (remember a high fat food can increase the amount of time it takes for Viagra to take effect, this has happened to me). Try to masturbate, slow and with lube or what I do is just use the water from the shower head to stimulate my penis and see how strong my erection is.... If you yield no side effects, next day try 100mg....

Let me know how you go.  
34 Years Old...Peyronies for 4 years. 20 Degree left and upwards curvature, major dents and narrowing, ED.

Implant + Tunica Expansion Procedure, 7th Feb 2023, Titan 22cm +1cm RTE, Partial revision 27th June 23 (fix pump, remove 10ml reservoir).

IwillbeatPD

Couple things to say on this:

Pfract- Man, that's the first time I read your whole story, and I have to say, very relatable. Many men here are married with a supportive wife, and that really is a different ball game than us young single guys face. Like you, I've always dated alot. After my symptoms started I didn't want to date anyone for a couple months. Then, exactly like you said, I realized it was best to try to act as normal as possible. I truly think isolating yourself or not dating is one of the worst things you can do. So, like you, I went on some dates and realized I could successfully do everything including oral sex without a problem. I take pentox and 5mg of Cialis a day. To JJ's point, I've been experimenting with upping the dose before date to get as rigid as possible and overcome the hinge. I figured this is also good on occasion to get a really strong erection naturally.

Anyway, the girl I've been dating is actually 34 and a virgin. Surprising I know. She was waiting till marriage and now doesn't know if she wants to wait, but certainly neither of us are rushing into sex-which is a perfect situation to me while I go through this temporary phase of fixing this. So 110% I applaud you for getting out there and dating. Also I applaud you for your honesty. I don't think the girl I'm dating has noticed the hinge. Or may she has and just figured it was normal for guys to be curved different-who knows. But if we get serious I would eventually tell her what I'm currently dealing with. Any decent girl, or someone worth your time would stick around. I think it would be different if you told her you'd never be able to have sex, ever. I don't think that's the case. We all have options. And as mentioned here-at the very worst you could get an implant and be back to normal for the most part.

I do want to try this mix of Cialis and viagra though! I might have to ask my uro to prescribe it to see if that combo gets me rigid enough to overcome the hinge during sex. I'm SUPER nervous about attempting sex because of the hourglass I have. I'd lose my mind if I made it worse trying. For now, baby steps. And if I do have sex I'd want it to be with a girl I've been with a while who would understand and be patient. No way I'm letting some girl hop on my dick and break it lol.
Fit 37 year old athlete. Hinging and hourglass began Sep 2022. Tried VED, Restorex, tadalafil with no improvement. Implanted by Dr Hakky 11/28/23 with Titan touch XXL 26 cm no RTE's. Pre op 8.25Lx 5ish G. Post implant: 8.25 L x 5.5 G

Stepone

Hey guys
Thanks for sharing many important psychological issues of relationships.
But to address the hinge. I am trying to remember back, because it's been almost 7 years. I don't recall the surgeon saying the hinge would fix itself over time. Am I wrong?
I thought he said it would only get worse and if I used it for intercourse I could actually cause more damage when thrusting.
I am curious if others were told something similar.
StepOne  
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

IwillbeatPD

I would have to agree with that, which is why I won't have sex. Common sense tells me if I aggravate it more the hinge will only get worse. This is why I think implants are under rated, even for young guys. Sure, nobody wants an implant at a young age with revisions necessary later on. But would you rather go the rest of your life having no sex, or mediocre sex while taking meds while constantly worrying about breaking your penis?


I have high expectations for my sec life, and unless Dr Christine thinks it's likely I'll be very close to where I was before this after undergoing ETG or PEG, I'll probably lean toward an implant. There's no way I'm spending the rest of my life worrying about my penis while being stuck on meds.
Fit 37 year old athlete. Hinging and hourglass began Sep 2022. Tried VED, Restorex, tadalafil with no improvement. Implanted by Dr Hakky 11/28/23 with Titan touch XXL 26 cm no RTE's. Pre op 8.25Lx 5ish G. Post implant: 8.25 L x 5.5 G

ohnoohno

Quote from: IwillbeatPD on December 26, 2022, 12:57:20 PM
I would have to agree with that, which is why I won't have sex. Common sense tells me if I aggravate it more the hinge will only get worse. This is why I think implants are under rated, even for young guys. Sure, nobody wants an implant at a young age with revisions necessary later on. But would you rather go the rest of your life having no sex, or mediocre sex while taking meds while constantly worrying about breaking your penis?


I have high expectations for my sec life, and unless Dr Christine thinks it's likely I'll be very close to where I was before this after undergoing ETG or PEG, I'll probably lean toward an implant. There's no way I'm spending the rest of my life worrying about my penis while being stuck on meds.

Yeah again right there with you, I haven't done much research about them but would definitely go to the best dr, im based in UK though... Although would travel and pay to have my bionic penis... I read some guys said it was the best and their partners love it, woohoo!

I wouldnt even feel ashamed to say I had a bionic penis but right now im not telling anyone i got peyronies  
29 y/o diagnosed 13 Jun 22.

went from a slight 30dg bend at glans to whole thing being deformed/loss of length over a year.

trying to find a way out of this all

Sonic

Quote from: IwillbeatPD on December 26, 2022, 12:57:20 PM
I would have to agree with that, which is why I won't have sex. Common sense tells me if I aggravate it more the hinge will only get worse. This is why I think implants are under rated, even for young guys. Sure, nobody wants an implant at a young age with revisions necessary later on. But would you rather go the rest of your life having no sex, or mediocre sex while taking meds while constantly worrying about breaking your penis?


I have high expectations for my sec life, and unless Dr Christine thinks it's likely I'll be very close to where I was before this after undergoing ETG or PEG, I'll probably lean toward an implant. There's no way I'm spending the rest of my life worrying about my penis while being stuck on meds.

Brother this is just an opinion but if you have ED don't even bother with those traditional Peyronies surgeries as they are only complicated and risk even further ED. Patients who do those type of surgeries and "succeed" is those who have top notch EQ. I put succeed in quoute marks because many have to do yet another surgery down the road due to deformity which occurs with time.

An implant is a very complicated surgery as well. But has the much better outcome as it tackles both your deformities and ED in one go and you can have sex as rough as you like without having to worry about a damn thing. Also you never have to think about Peyronies again for as long as you live whereas with standard surgeries there is ALWAYS a risk to become deformed again

This is just my two cents. Good luck whichever road you chose to take bro!
30 years. Sudden rightwards curve detected in June 2020
Narrowing on right side and about a 20° curve to the right.
ED + instability due to narrowing.

jj21

Quote from: IwillbeatPD on December 26, 2022, 12:57:20 PM
I would have to agree with that, which is why I won't have sex. Common sense tells me if I aggravate it more the hinge will only get worse. This is why I think implants are under rated, even for young guys. Sure, nobody wants an implant at a young age with revisions necessary later on. But would you rather go the rest of your life having no sex, or mediocre sex while taking meds while constantly worrying about breaking your penis?


I have high expectations for my sec life, and unless Dr Christine thinks it's likely I'll be very close to where I was before this after undergoing ETG or PEG, I'll probably lean toward an implant. There's no way I'm spending the rest of my life worrying about my penis while being stuck on meds.

Read journals of 'Hawk' and 'StepOne', they both had the nesbit surgery I believe (not sure how similar that is to ETG/PEG), but they opted for implant afterwards. I believe they are both of the opinion that, the implant yielded much greater results, and they would have opted for it prior to the nesbit, had they been aware of it.  
34 Years Old...Peyronies for 4 years. 20 Degree left and upwards curvature, major dents and narrowing, ED.

Implant + Tunica Expansion Procedure, 7th Feb 2023, Titan 22cm +1cm RTE, Partial revision 27th June 23 (fix pump, remove 10ml reservoir).

Stepone

Yes I had a Nesbit surgery to fix the hinge and 45 degree bend.
I was suffering from ED at the time. The urologist made no mention of an alternative such as an implant. The urologist told me I may lose a small amount of length but my girth would increase and my hourglassing would go away. Had I known then what I know now, I definitely would not have had the Nesbit.
The urologist did fix the hinge, the hour glassing was gone, but I had decreased girth by almost 1/2 inch, and I lost a full 1.5 inches in length. I became depressed and my ED became worse and I had to start injecting into my penis because the Viagra no longer worked. I suffered for 3 years with sporadic semi-functional sex.
I found this site and that's when I became aware of implants.
The implant has been amazing.
It restored about .8 inches in my length and gave me a full inch increase in girth.
My sex continues to get better.
When I first got my implant I was scared, I thought what have I done? It took a good year for me to become comfortable with my implant. But as time went on, and the pain diminished and it restored my length and increased my girth, I could not be happier! And my spouse loves my never ending hardness and the increased girth. I am defending a happy implant client.
StepOne  
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

Indenialguy


Great Post, gives me hope for the future should I ever go down the implant route.
Amazing that it increased both girth and length for you, is that a common outcome do you know? I've seen people say about girth increase because of an implant but I didn't know it does length too?  
32 yo UK
Engaged with two young children
Injured 2017, healed
RE injured Sept 2022
Chronic flaccid pain since 2nd injury
Starting 5mg cialis daily, trying to obtain pentox online

Possible hard flaccid, possible Peyronie's, possible nerve damage

ohnoohno


Man hearing your implant story really gives me soooo much hope and almost takes a huge weight off my shoulder, I'm someone who's broken bones and has metal in them, big scars for accidents, surgeries so the thought of a implant is just another addition to this list of mine haha... Obviously WAY different but altering my body a bit wouldn't be the worse thing in the world to me if it means I will be able to have my penis back eventually.. I'll continue my treatments for now as still early but there's times when I've got so depressed thinking my life is over but hearing of this implant recently really gives me big hope that if all treatment fail I can fall back on an implant with a highly trained dr...

How does it feel? Can you feel the implant in you as you walk around day to day? Does it feel like theres plastic in ur penis? I'm very curious, is it uncomfortable?  
29 y/o diagnosed 13 Jun 22.

went from a slight 30dg bend at glans to whole thing being deformed/loss of length over a year.

trying to find a way out of this all

Stepone

Ohnoohno,
I am so sorry for what you are dealing with at such a young age. I can't imagine, but you sound like you have a strong spirit in you.
Yes, i can feel the cylinders in my penis.
But after a while, I got used to it and they became a part of me.
Actually with an implant, your penis becomes larger in its soft stage, it's an added benefit, lol.
So even after having an implant for nearly 4 years, I still feel like like I have a semi, aka chub, all the time.
Stay strong and keep your spirits positive.
Happy New Year!
StepOne  
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

ohnoohno

Quote from: Stepone on January 02, 2023, 08:53:14 PM
Ohnoohno,
I am so sorry for what you are dealing with at such a young age. I can't imagine, but you sound like you have a strong spirit in you.
Yes, i can feel the cylinders in my penis.
But after a while, I got used to it and they became a part of me.
Actually with an implant, your penis becomes larger in its soft stage, it's an added benefit, lol.
So even after having an implant for nearly 4 years, I still feel like like I have a semi, aka chub, all the time.
Stay strong and keep your spirits positive.
Happy New Year!
StepOne

Thank you, just got to keep on moving forward and not let it change me. I appreciate this forum and people like yourself.

Interesting you can feel it but also can imagine as you say you'd get used to it after a while. Do you have to get in changed every 10 years or anything like that? Did it cost much? These are all questions I'll google properly but as I got someone with first hand experience infront of me haha.

Happy new year to you too I hope you're blessed in 2023.  
29 y/o diagnosed 13 Jun 22.

went from a slight 30dg bend at glans to whole thing being deformed/loss of length over a year.

trying to find a way out of this all

jj21

Quote from: IwillbeatPD on December 25, 2022, 11:52:23 PM
Couple things to say on this:

Pfract- Man, that's the first time I read your whole story, and I have to say, very relatable. Many men here are married with a supportive wife, and that really is a different ball game than us young single guys face. Like you, I've always dated alot. After my symptoms started I didn't want to date anyone for a couple months. Then, exactly like you said, I realized it was best to try to act as normal as possible. I truly think isolating yourself or not dating is one of the worst things you can do. So, like you, I went on some dates and realized I could successfully do everything including oral sex without a problem. I take pentox and 5mg of Cialis a day. To JJ's point, I've been experimenting with upping the dose before date to get as rigid as possible and overcome the hinge. I figured this is also good on occasion to get a really strong erection naturally.

Anyway, the girl I've been dating is actually 34 and a virgin. Surprising I know. She was waiting till marriage and now doesn't know if she wants to wait, but certainly neither of us are rushing into sex-which is a perfect situation to me while I go through this temporary phase of fixing this. So 110% I applaud you for getting out there and dating. Also I applaud you for your honesty. I don't think the girl I'm dating has noticed the hinge. Or may she has and just figured it was normal for guys to be curved different-who knows. But if we get serious I would eventually tell her what I'm currently dealing with. Any decent girl, or someone worth your time would stick around. I think it would be different if you told her you'd never be able to have sex, ever. I don't think that's the case. We all have options. And as mentioned here-at the very worst you could get an implant and be back to normal for the most part.

I do want to try this mix of Cialis and viagra though! I might have to ask my uro to prescribe it to see if that combo gets me rigid enough to overcome the hinge during sex. I'm SUPER nervous about attempting sex because of the hourglass I have. I'd lose my mind if I made it worse trying. For now, baby steps. And if I do have sex I'd want it to be with a girl I've been with a while who would understand and be patient. No way I'm letting some girl hop on my dick and break it lol.

5mg of the cialis daily tablets (each day), then 100mg Viagra before sex, allowed me to have a functional sex life again. It just depends on your condition but definitely try it out on your own first and see if the erection is rigid enough for penetration. Be very careful, with a hinge, it is very easy to reinjure yourself during sex.  
34 Years Old...Peyronies for 4 years. 20 Degree left and upwards curvature, major dents and narrowing, ED.

Implant + Tunica Expansion Procedure, 7th Feb 2023, Titan 22cm +1cm RTE, Partial revision 27th June 23 (fix pump, remove 10ml reservoir).

Stepone

I have had my implant for 4 years.
I have read that the can last 20 years or more, but there are lots of stats from lots of studies.
My healthcare plan covered most of it. My out of pocket expense was about $180.
Yes, best wishes for you.
StepOne  
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC