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Author Topic: looking for answers after 3 years  (Read 277 times)

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gobbler

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looking for answers after 3 years
« on: November 26, 2022, 02:05:53 PM »

hello!

I tried to stay away from this forum due to not wanting to be reminded of the subject matter, however the dysfunctional state of my penis has made me return. I just want answers.

as for my history, ive gotten a curve and indentation in February 2020 so almost 3 years ago. after taking daily Cialis and using just basically waiting the deformity reduced to an extent where it could well live with it. it was fine. then in mid 2021 a new issue appeared, a deformity under the glans, an indentation. one of the most sensitive areas of my dick just vanished basically, turned completely insensitive. over the next year I have had a strange deformity affecting the entire left side of the penis. the symptoms are as followed:

- during erection(even with Cialis) to maintain a full erection I need constant physical stimulation. before this, when I was aroused I could feel the inflow into the left erectile body and it widening and trapping the blood. now it feels like there is no pressure development anymore and I manually have to store the blood in. if I stop it it leaks out

- there is significant discomfort associated with an erection. this is mainly located on the left side of the penis and it is a stretching pain. normally getting an erection feels good, the stretching of the tissue and the tunica. in my case it feels like there is a sheath of tissue above the tunica that prevents its expansion.

- when flacid often times I have severe pain in this area(left side of the penis). it is not present everyday but some days it is very prominent. it feels like an open wound, burning. like a broken bone almost

- when I get a half erection the penis bends significantly to the left. this can be straightened by the pressure of a full erection but it shows me that there is something that does not belong there. in half erect I have like a 50% bend that used to not be there. this is the exact same location where I have the pain erect and flacid.

-> these symptoms have been going on for 16 months now. It has affected my mental health to great extent and I basically see the idea of a relationship as utopia at this point.



-> my theory is that I have diffuse fibrosis of the tunica albuginea that gets irritated upon erection. this explain the Erectile Dysfunction because it could mess with the veno occlusive function of the tunica giving me something like a venous leak. that explains why I feel like there is blood rushing through the arteries but it cannot be trapped and no pressure can build up. it also explain the pain and the deformity.

-> another theory is that I have corporeal fibrosis of the smooth muscle tissue in the left distal 2/3rds of the penis. that would give the same symptoms. also when in semi erect, one side, the left one is obviously narrow in one area where most of the pain is and I think this might be due to wasting of the tissue underneath.



i have seen my doctor last summer and he did an ultrasound in flaccid state. he said that he could not find anything wrong with the tissue but that I should return if it does not improve. however he suggested I have fibrosis in the septum where US cant pick it up

and now I am basically preparing for a return visit in the beginning of next year. I am determined to finally find out after so many years what exactly is going on and I wonder what questions I should ask.

would it be appropriate for me to request a doppler ultrasound with injection? after almost 2 years of Erectile Dysfunction and not even responding properly to Cialis I feel like it is time to get to the bottom of this?
i want to really know and understand what the tissue is that is obviously there and I can even feel it. under the glans where the indentation is there is a hard noodle circumferential around the penis. could this be scar tissue?


thanks for your time and reading
Logged
diagnosed with peyronies disease in Feb. 2020
mid 20
tried VED without much success, Cialis and potaba
single

Sonic

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Re: looking for answers after 3 years
« Reply #1 on: November 26, 2022, 05:43:07 PM »

I was about to give a more in depth reply but after the reading the last part of your post I don't need to.

It is a very good choice by you to make a return visit to the urologist because on here all we can do is give opinions, guesses and so on but the doctor can give a straight forward answer. Since your Erectile Dysfunction is so advanced I would 100% tell the doc to do the US while erect because then it is not only easier to spot plaque and calcifications but he also gets a clear view of blood flow and any hindrance of it.

So you will most likely get a diagnose right there and finally get an answer, at least that's what I hope.
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28 years. Started to develop a rightwards curve in June 2020.
narrowing on right side and about a 20-25° curve to the right.
Weakened erections and instability due to narrowing.

gobbler

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Re: looking for answers after 3 years
« Reply #2 on: November 26, 2022, 07:40:21 PM »

thanks sonic for your comment. I saw that you are in a similar spot in regards to being affected for a while but not really seeing progress or getting answers. I hope the visit with the Dr can clear things up for me. I will prepare a whole note of questions, last time I was totally unprepared and it was rushed and I didn't get the attention that I through I deserved.

I really want to do the doppler US. because, he could not palpate anything and see anything in flaccid US but I do have the deformity and significant pain upon erection on the entire left side of the penis for 16 months now. I cant understand how can cannot see and feel anything when I have so much pain and I have a clear visible bend there and indentation.

it is hard to accept something that you dont fully understand and when you think people with the knowledge and skill dont give you the time of the day.. I am starting to wonder if I will ever figure it out. I actually gave up for half a year because I did not see a point anymore. but now I feel like something must be done about it. even an implant is better than the current state which is absolutely miserable
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diagnosed with peyronies disease in Feb. 2020
mid 20
tried VED without much success, Cialis and potaba
single

Sonic

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Re: looking for answers after 3 years
« Reply #3 on: November 27, 2022, 12:00:55 PM »

Yeah it seems getting clear answers heavily varies depending on where you live. First and foremost the doctor has got to have an interest in helping you, something both uros I visited very obviously did not.

Patients who for for example visit a doctor with much experience like Dr.Trost have much higher satisfaction rates versus some random european urologist.. The only way to get clear answers and good outcomes relies heavily on the doc you visit.

I think you will get a much clearer pic when you've gotten the US. For me personally I am looking for different doctors and see if I will perhaps find a decent one who can at least diagnose where my Erectile Dysfunction stems from and how it can get better.

How I feel varies day by day. Sometimes I just feel like giving up on everything while other days I legit couldn't give a damn about Peyronies. However I have noticed with time I am starting to learn to deal with it better I swear bro when you look around at the amount of diseases and ilnesses in the world Peyronies is really not that bad.

I have told myself that I will one day, one way or another be cured while at the same time I have just learned to accept my current predicament. I hope you also find some way to break that constant negative thought pattern and let go. Once you do that things will start flowing and get better day by day.

I 100% believe both you and me will cured sooner or later.

Until then all we can do is man the F up and ride out the battle.
Logged
28 years. Started to develop a rightwards curve in June 2020.
narrowing on right side and about a 20-25° curve to the right.
Weakened erections and instability due to narrowing.

IwillbeatPD

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Re: looking for answers after 3 years
« Reply #4 on: November 29, 2022, 12:16:33 AM »

Hey Sonic,

Curious about your situation since we seem to have similar circumstances. I also have a very very minor curvature, but the bigger issue is the indentation that causes instability. What all have you tried so far? Any successes or things you would recommend staying away from? I just joined today and would appreciate any advice you have for me.
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36/Male/No underlying conditions: Symptoms began Sep 2022. Indentation mid-shaft right next to plaque. Mediocre erections with hinge effect. Taking Pentox 400mg 3x/day, Tadalafil 5mg daily, L-arginine, using heat, manual traction and VED.

Sonic

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Re: looking for answers after 3 years
« Reply #5 on: November 29, 2022, 08:57:09 AM »

Hey Sonic,

Curious about your situation since we seem to have similar circumstances. I also have a very very minor curvature, but the bigger issue is the indentation that causes instability. What all have you tried so far? Any successes or things you would recommend staying away from? I just joined today and would appreciate any advice you have for me.

Hello. I've only gone down the supplement route. Daily Tadalafil and L-Citruline. It helps with bloodflow. I wanted to try traction for years but reading about patients who got their narrowing and dents worse by traction I never gave it a try out of fear. It seems a medical grade VED is the best option for guys like you and me but there's also the risk with that of further injuring oneself so I've stayed away from those things.
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28 years. Started to develop a rightwards curve in June 2020.
narrowing on right side and about a 20-25° curve to the right.
Weakened erections and instability due to narrowing.

IwillbeatPD

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Re: looking for answers after 3 years
« Reply #6 on: November 29, 2022, 11:27:21 AM »

This is what I was wondering as well. Is traction even beneficial for people like us with indents only? I mean traction is for straightening not so much to fix indentations right? To me, logically, it would make sense that a VED or blood flow could help, even massage.

One thing I feel that helps is using the ok sign with your hand, starting at the base and massage outward as to extend the length out. Do that motion over and over and I feel like you're encouraging blood flow to the area while also gently lengthening/modeling. Similar to how a VED creates a controlled erection in a small cylinder that creates a more straight erection. Not to be confused with actual stretching/traction (which I feel like might make mine worse). It's a gut feeling I have but I don't feel like traction is the answer if curvature isn't a huge issue.


Also, why did you not opt to go for pentox?
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36/Male/No underlying conditions: Symptoms began Sep 2022. Indentation mid-shaft right next to plaque. Mediocre erections with hinge effect. Taking Pentox 400mg 3x/day, Tadalafil 5mg daily, L-arginine, using heat, manual traction and VED.

Sonic

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Re: looking for answers after 3 years
« Reply #7 on: November 29, 2022, 12:04:23 PM »

If you go to the traction section of the forum you will see it's hit and miss regarding narrowing and dents.

As for Pentox, it's not available in Sweden and urologists here have no knowledge about it or that's it's even used in many cases for Peyronies so I never got a chance to try. In the states based on what I've read in this forum it seems a prescription for pentox is routine after a diagnose.
Logged
28 years. Started to develop a rightwards curve in June 2020.
narrowing on right side and about a 20-25° curve to the right.
Weakened erections and instability due to narrowing.

gobbler

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Re: looking for answers after 3 years
« Reply #8 on: December 06, 2022, 10:24:52 AM »

Yeah it seems getting clear answers heavily varies depending on where you live. First and foremost the doctor has got to have an interest in helping you, something both uros I visited very obviously did not.

Patients who for for example visit a doctor with much experience like Dr.Trost have much higher satisfaction rates versus some random european urologist.. The only way to get clear answers and good outcomes relies heavily on the doc you visit.

I think you will get a much clearer pic when you've gotten the US. For me personally I am looking for different doctors and see if I will perhaps find a decent one who can at least diagnose where my Erectile Dysfunction stems from and how it can get better.

How I feel varies day by day. Sometimes I just feel like giving up on everything while other days I legit couldn't give a damn about Peyronies. However I have noticed with time I am starting to learn to deal with it better I swear bro when you look around at the amount of diseases and ilnesses in the world Peyronies is really not that bad.

I have told myself that I will one day, one way or another be cured while at the same time I have just learned to accept my current predicament. I hope you also find some way to break that constant negative thought pattern and let go. Once you do that things will start flowing and get better day by day.

I 100% believe both you and me will cured sooner or later.

Until then all we can do is man the F up and ride out the battle.

thank you Sonic, your words felt good. I think my problem is that the andrologist genuinely did not seem to detect anything on the ultrasound. but my deformity is there. it is not the worst and just by pure metric not that severe(in terms of raw curvature in degrees or length loss in cm). However the area where it is indented right under the glans is the most sensitive for me and the deformity and general rigidity(hard to describe, of course a hard penis is hard but mine is less flexible in a semi erect state due to scar tissue and thats very uncomfortable) makes anything sexual far less enjoyable. also erections I can only have in certain positions and there is no rushing of blood into the penis anymore, it feels like I need to pump it in with my hands manually and if I stop it deflates.

additionally I had some issues with my dick before all this due to shape and size and this has exacerbated it quite a lot. and I think that is hard trying to get across to a doctor. I think there really is not much he can do, especially about the indentations. he said grafting is not an option at my age and xiaflex is not possibility due to nature of the deformity and its not available anyway.

overall despite the relatively "minor" deformities my overall functionality has gone down. I also know the libido thing. it works two ways, better libido gives better erections but better erections also increase libido in my case. you feel more capable when everything works and that increases confidence, mood and libido also. I have also found no significant improvement with Cialis ,the erection still feels uncomfortable as if there were patches of less flexible tissue all over the left side of the shaft making it hard to expand. girth is also reduced overall there.

but when I present this, the doctor says the cavernosal body looks find, no obvious scarring in grey scale ultrasound.
i want to talk about erect doppler ultrasound next time but I dont have much promise for it. maybe his diagnosis of septum plaque that cant be detected is true and there is not much I can do about it anyway
Logged
diagnosed with peyronies disease in Feb. 2020
mid 20
tried VED without much success, Cialis and potaba
single

FrankPD

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Re: looking for answers after 3 years
« Reply #9 on: December 06, 2022, 11:24:21 PM »

Yeah it seems getting clear answers heavily varies depending on where you live. First and foremost the doctor has got to have an interest in helping you, something both uros I visited very obviously did not.

Patients who for for example visit a doctor with much experience like Dr.Trost have much higher satisfaction rates versus some random european urologist.. The only way to get clear answers and good outcomes relies heavily on the doc you visit.

I think you will get a much clearer pic when you've gotten the US. For me personally I am looking for different doctors and see if I will perhaps find a decent one who can at least diagnose where my Erectile Dysfunction stems from and how it can get better.

How I feel varies day by day. Sometimes I just feel like giving up on everything while other days I legit couldn't give a damn about Peyronies. However I have noticed with time I am starting to learn to deal with it better I swear bro when you look around at the amount of diseases and ilnesses in the world Peyronies is really not that bad.

I have told myself that I will one day, one way or another be cured while at the same time I have just learned to accept my current predicament. I hope you also find some way to break that constant negative thought pattern and let go. Once you do that things will start flowing and get better day by day.

I 100% believe both you and me will cured sooner or later.

Until then all we can do is man the F up and ride out the battle.

Great words by Sonic, always saying what most of us are feeling.

We do have to think positive, find ways keep ourselves busy and move on. 

Can’t give up.
Logged
Age 46
No injury
Diagnosis January 2022  
Have plaque
Hourglassing when flaccid and semi-erect
Still have my congenital curve, no severe curving
Massaging with vitamin E cream twice a day 
Low carb diet
Discomfort/aching sometimes
Best to all!
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