Introduction, questions, and gameplan

[westerntown]

Hello,
It's a pleasure to join. I'm 20 years old, I have no prior history of ed/penile disformity since before the pandemic and am also a typical gym goer/healthy eater. During the late pandemic (late 2020), I acquired a sex injury masturbating roughly and came down with "hourglass" look after ejaculation in where the deflated penis had the blood flow back down in a figure 8 style. Initial rxn was not to freak out but rather carry on. Did zero research on the condition and just accepted that it would most likely get better after a while.

Flash forward to august 2021, I come down with a slight pain in shaft that is hard to pinpoint the exact location. I also noticed throughout my string of sexual relationships between the injury and now, there has strangely been diminishing erectile function: i am not getting morning woods, random erections, and it takes a significant amount of physical stimulation to even get me hard or really even half chubb. I had a cooperative partner at the time (a little before august) and she didn't mind going down on me for a while, so I just figured whatever.

After the partner left, I began to seek medical opinions. First couple urologists I went to told me I was fine (I didn't even bring up the hourglass) and they just palapated my flaccid penis and prescribed me cialis. I went home and did my own research, where I inevitably found the Peyronies Disease, the forum, and Neo's videos.

In September, I went to a very very renowned urologist, dr Martin gelbard, a doctor at ucla who also was a cog in the creation of xiaflex. He told me the hourglass while semi was normal and that the Ed was in my head and to take cialis. I sought out a couple more doctors opinions, got prescribed pentox by another,, and eventually found one who was willing to conduct the ultrasound for me. We did the erect ultrasound (took 9 overall needle injections to get me up and then down, 2 up and 7 down, since I know you're wondering) and we found that I have no venous leak and really great bloodflow. The area that was above the hourglass during semi remained flaccid while the bottom was erect, then it slowly began to fill up. The doctor described this as abnormal filling and then he put the ultrasound over that area and said he found very mild corporal fibrosis. I was both happy and sad to hear this because I figured, at least there is no plaques.

This doc ended up just trying to pitch me shockwave and prp after, so I kind of dropped him. He did tell me to go to pelvic floor physical therapy which u have been going to but honestly I don't see much improvement. I take daily 5mg cialis, stopped pentox after a month because it was making me dizzy as hell, and just started adding ALCAR, Citruline, Popolis, bilberry, PABA, Coq10, magnesium, vitamin E, vitamin D, pine bark to the regimen.

Aside from the supps and physical therapy, I try to apply heat as often as I can via rice sock, and find that that positively makes my penis more elastic albeit temporary. I am on keto diet, had my my blood and urine checked which all came back clean.

Currently I am losing length slowly, even seeing very very minor dents occurring in top right shaft under glans and lower urthera (very very minor). Manual traction really caused me pain so I am abstaining from that and I never jerk it anymore. I've told all sexual partners that we need to wait a while. I don't drink alcohol or doing anything bad for the body. I am trying everything I can to get over this hump- but I'm aware that I'm likely going to just have to manage the hump for the rest of my life.

I'm 20, so I need a game plan. Living in the world of unknown has caused severe anxiety and crippling depression. I would like to go on SNRI's but I don't want to compromise the sexual function. I made a facetime appointment with trost for mid noevember. From what I hear, he is not too helpful when it comes to semi erect hourglassing, so I hope that he can at least help point me I. The direction of who is.

I am researching everyday, hoping stem cell or hyperbaric oxygen will reverse the mild corporal fibrosis. I am even willing to try the nitroglycerin patches at this point, although I would likely have to wait for the NO2 Supplemtns to fade from my body first.

I really hope this post doesn't go unnoticed. I made a game plan, but I would like the forums advice , motivation, suggestions, expertise, and help.

Thank you. And like I wrote: a smooth sea never made for a great sailor.

[Asphyxia]

Hello, welcome.

In my opinion having pain while doing manual traction isnt a good indication that a traction device will result in the same outcome.
you might have pulled too hard or something. But generally when using a traction device you start very slowly at a very low tension.

Im not sure if traction does anything for hourglassing though, but maybe it can stop you from losing more lenght

VED tends to be recommended often here aswell.

It is possible to injure yourself using those therapies, so if you decide to do it then be cautious.

[Mikel7]

Welcome to the forum Westerntown!  I must first say what a very well written and thought out posting! It seems that you did fill out your signature line - Excellent!  If you haven't read the survival guide then  you should -->https://www.peyroniesforum.net/index.php/topic,3180.msg44057.html#msg44057 .It will give you a lot of info.

You have a couple of things going for you. The first thing is that you are young.  You should heal better than an older guy as myself. You are being proactive and take pretty good care of your physical health and you are aware of your mental status, which is good as you have things in perspective. Meds for anxiety and depression are notorious for causing ED problems . You are also smart enough to know when it is time to say so long and get a new Dr.  Who knows what the future brings to peyronies patients - you may benefit from some miraculous cure in the years to come.

I would never recommend manual traction to anyone as you cannot gauge the level of pulling force and you could cause more damage.  Investing in a traction device can be a benefit and a healing force of it's own. With gentle traction you can prevent shrinking and gently stretching things out.  You should also educate yourself on VED therapy.  The forum has a tried and tested article on the subject.  The supplements you are taking can also benefit you too.  I have benefited  from heat therapy also.  It seems to increase blood flow and help with any pain I might be having.  One mindset I have is in looking to keep any bodily inflammation down. I suffer from arthritis and I employ the supplements plus Boswelia and curcummin at times in helping my body out.

I  have been on VED and traction therapy for almost a year now and I have almost regained back what I have lost.  This is a marathon and not a sprint. Trying different things and then assessing if it is helpful will give you a game plan in combating this disease.  Keeping sex gentle and infrequent also helps with healing. Nighttime erections also facilitate healing with fresh oxygenated blood and stretching the tissues out. It sounds like you have a great plan of action already.  I wish I could take Cialis again as it helped me out a lot.  I am not sure if Pentox was helping either as I was on it only 3 months before my SNHL. Be encourgaed and read the forum - there are a lot of great guys here who all know about this upsetting disease.    Mikel7

[Hawk]

Westerntown,  Welcome to the forum.

I have genuine empathy for what you are going through.  I wish I had the words to help.  By my assessment, this is the situation.

One of the leading Urologists in the country gave you his assessment.  Two or three others agreed.  Only the more fringe urologist gave you a diagnosis and offered treatments pretty well known not to work.  Which diagnosis would an open-minded, intelligent person embrace?  

If a random 20-year-old showed up on the forum with no diagnosis and claims to have Erectile Dysfunction/Peyronies Disease and a progressively worsening penis, I would be very skeptical.  Medical facts suggest there is a far greater likelihood of other physical and psychological factors behind his problems than there is with progressing fibrosis.  Now, if I add to such a random 20-year-old that he has a diagnosis refuting Erectile Dysfunction/Peyronies Disease from multiple doctors, including experts, what can I think?  If I add that he is suffering from an unhealthy mental state and that all this started not from a penile fracture or significant sports injury but from a masturbation session...I have to put my gamble with Dr. Gelbard.    

That is not to say I would bet my life on it, but I might if the jackpot was big enough.  It is also not to say that you do not deserve help for your issues or that you are not respected.  I very much respect you and the fact you have a significant problem that needs addressing.

The other thing that makes advice difficult is that you are doing everything you should do for progressing fibrosis on your own.  The only option you did not mention is mechanical traction and/or VED.  I would suggest Mechanical Traction/VED.  If you can do one, I recommend mechanical traction but you might want to wait until you meet with Dr. Trost.  Maybe not.

I also think you owe it to yourself to spend as much time searching out highly competent counseling, even if that means going to as many counselors as you have urologists. Finally, if you try an oral medication, I would suggest trying Wellbutrin.

I hope you do not feel dismissed or any other negative assessment.  I owe you honesty and gave you the best I have with the facts provided.

Please stick with us as you work through this.

Best Wishes!

[westerntown]

Hawk

I appreciate your response. I wanted to ask you two questions:

1) Did you mean to say I am doing everything i can do to PROGRESS the fibrosis or PREVENT?

2) In all your years of moderating the forum, have you ever seen/heard of someone with similarities to my situation?


Once again, thank you for taking the time of the day to help in becoming a smooth sailor

[cdub]

Keep us posted on what Dr. Trost has to say.  I would say though that if you want a more in-depth second opinion from one of the more well known specialists dealing with Peyronies I would see them in person.  Hands on palpation and/or Ultrasound should really help them give a full diagnosis one way or another.  While an online appointment may give you some good information and help get you in front of a very qualified doctor you really can't beat meeting them in person, and that is for sure what I would do if I were in your situation.  For me it was easy as Dr. Levine is literally in my back yard.  Best of luck to you fella.  

[westerntown]

Thanks man, unfortunately I've met with several years already. The consensus here is that I don't have Peyronies Disease.

I'm real happy to hear it, but my penis does buckle and make a terribly uncomfortable (even painful) hourglass while semi erect. The buckling effect has gotten worse over time but it somehow miraculously fills by the time of full wrection.


It's quite an enigma and I don't think we'll ever get the answer to it

[cdub]

Damn.  I just typed out a long response and it didn't take.

I just wanted to say, my advice to you is to be careful if you are having repeated buckling.

I had had a large indentation develop in March of 2020.  The diagnosis was no Peyronies at the time.  But I firmly believe that indentation lead to instability in my penis which lead to repeated buckling which ultimately lead to a micro fracture for me in June of 2021

Make sure your erections are very hard when having sex.  Buckling at the moment may not pose any issues/injuries immediately but over time it could lead you to a micro fracture or fracture and you do not want to be in either of those camps.  

For me my diagnosis right now again is still no Peyronies, but I am not in good penile health, but I'm working on it.  Right now I'm using traction to see if that time under tension will encourage new cell growth which I'm hoping will fill in the indentations and lead to a more stable penis.  Time will tell.  I may look into VED if the traction does not end up helping.  Best of luck to you.

[westerntown]

Unfortunately before I realized it was anything, I used it plenty of times for sex where it actually buckled plenty.

Still we're only happening in the semi erect phase and so I am a crossroads for the next steps to take.

What I can recommend is NOT to do manual traction as I found that made me worse.

I am going to just stop touching my dick for a while and reevaluate if things aren't getting better

[westerntown]

Update:

My erectile dysfunction has gotten significantly worse. To the point where I am unable to have sex whatsoever. Even on 5mg daily cialis, my penis is not getting fully rigid. I am at lost for words, and contemplating suicide

On the end of the hourglass, it still occurs but more often what occurs is a sort of taper style look. I also do not get engorged glans often during erection. I rarely come by erections anymore. They never ever happen randomly or in the morning.. if i do stimulate with a partner... i get erect but not HARD.. just feels like blood is in my penis. I honestly dont know what to do and doubt anyone will see this post anyway. Its just for my own personal peace of mind to distract myself by making this post.
Best
Westy

[NEIL_TENET]

Hi Westerntown, First of all - I'm sorry to hear about your troubles. This disorder is a mental nightmare and a real bummer, especially for young people. Please, don't think about bad things. I don't know what tremendously to recommend, but I think that you just need to find a right peyronie specialist like Mr. Levine at this current times. Furthermore, it seems that you live in USA, so you lucky as you can come to Mr. Levine as soon as possible. For example, I'm living with this disorder 10 years and living in a backward country is a real trouble as I don't have access to famous peyronie specialists. And, by the way, the most doctors using pandemic situation and my long-distance case just cheated me wasting my money on the hassle video visits without offering a real help. So, as I already told you, please, don't think about bad things and just go to real peyronie specialist like Dr. Laurence Levine. Maybe there is no magic pill, and maybe famous specialists can not return the prior state, but at least they probably know and probably can to offer the different tremendous options which will enough for the further happy men's life, according to some different reviews, some stories and some testimonials. You just need a right specialist at this moment. All the Best. Sincerely.

[GaussRifle]

Western town, first of all you are not alone in your twenties, it's ok, you got some sort of an injury , it happens. What's done is done now and could happen to anyone. Your next step is to get an ultrasound for blood flow measurements to clinically diagnose if you have ED. Please go to a top specialist only , not your local urologist. If it is indeed ED, doctor will up your dosage and then see what happens, honestly speaking 5mg cialis is not a lot, I know because I use it too. My doctor told me take another 5mg over the daily 5mg I take while having sex. For some people other medicines work. If this doesn't work for you, doctor will look at surgical solutions like implants etc....
Also,  please stop having sex with girl on top if you do, it's the number one position that messes up dicks. Also, please avoid rough sex and buckling. Only have sex when you are reasonably hard. Good luck....we are all here for you and will ensure you get through this. Heck,,,, even I need your help and from others to get through this.  

[westerntown]

My penis no longer gets rigid when erect. I dont know what to say I am the saddest I have ever been in my life

[Hawk]

This topic is locked because forum rules allow only one introduction topic per member on the Introduction Board and only 10 posts within that topic.  All additional posts have to be in the appropriate board on the main forum.

Please continue the exchange in the appropriate boards on the main forum below.

Best Wishes