My story

[Concerned patient95]

Hello, someone from another forum directed me here so I can hopefully get more help. I'm going to copy and paste my original post from the original forum I posted on  hopefully someone can point me in the right direction


About 4 weeks ago, my penis was leaned on in a rather unpleasant way. At the time i hadnt felt any pain and had continued sexual activity with my girlfriend further into the week. It was only a few days later that i had finally noticed a dull ache, and to my horror i seemed to be lopsided. I immediately ceased all sexual activity and masturbation due to the pain, but i have no problem attaining an erection. My penis for as long as i can remember has always been heavily curved to the left, but never severe enough to interfere with my sex life. upon inspection it appeared that i didnt worsen the curve, but rather as if it is now twisted and angled toward the left. both flacid and erect, it looks as if it has lost suspension at the base and is now falling over towards the left on top of the the curve as well. I also have a very prominent lymph channel running from the base towards the mid shaft of left side as well. A very prominent blue vein following alongside. I left it alone for about a week and a half but the pain only seemed to worsen making walking and moving extremely uncomfortable. I scheduled an appointment with urologist. But for the 200$ i spent, i was devastated that he seemed to barely take me seriously. Since i am 19 i felt as if he thought i was obsessed with my curve and look of my penis rather than function. and continued to insist i was fine after his examination. he barely answered any of my questions and literally only spoke with me a total of 5 minutes and recommended i take anti inflammatory medication. Now almost a week has past and the pain does seem to have reduced drastically. however the lymph channel is still bulging, and my penis still appears to be twisted. upon another inspection today it seems as if i missed some discoloration that i thought was part of my circumcision scar. It now looks as if it is bruising underneath my penis by the area of the injury. my self diagnosis is the tissues were damaged preventing blood flow and and the lymph channel is attempting to transport the dead cells out explaining the swelling of the channel. I understand there is no real treatment option for this, but being 19. this has depressed me terribly. im considering seeing another urologist, but seeing as your replies were more helpful than the help i got from a 200$ doctors appointment, im not so sure of what to do. Any response will be greatly appreciated.Having some answers would at least put my mind at ease. im petrified greatly of the thought of permanent damage.

[LWillisjr]

Concerned.....
Suggest you read the following if you haven't done so already. It may answer some of your initial questions. I am not sure I understand your symptoms as you have described. But we have many seasoned veterans on this forum and happy to help.

MUST READ BEFORE YOU POST - Information for new members - Peyronies Society Forums

[Concerned patient95]

         I apologize for not thoroughly reading the introduction thread of what Peyronie's disease is and how to seek help. I have done so now, and I will try to explain my current situation more clearly in hopes of getting advice from expirence members. For as long as I can remember I have suffered from a mild curve of about maybe 25 degrees to the left, but never expierienced pain or inability to attain an erection. It has never been a problem.
       
         Now recently however, I believe during sexually activity with my girlfriend I have caused some additonal damaged to my penis. The original curve did not worsen, but it feels as if I have damaged near the base on the left side. I was expierencing a mild ache, and affected the structure in a new way that appeared to me as if my penis has been twisted or rotated about 10-15 degrees to the left, the same way you would turn a door knob. It now falls over to the left, as well as curving to the left.

       I have seen a urologist  because of the pain, but he didnt seem to take the situation seriously, and told me I was fine and not to worry about this new unusual twist or tilt to my penis. It has been about 5 weeks since the pain had started but now the aching has stopped but my penis is still appearing to be rotated and leaning towards the left both when flaccid and erect. I've seen another urologist but he has also concluded that as long as my erections aren't painful and sex isn't impossible no action is needed. I am convinced that I damaged the tissue at the base of my penis from this recent injury, and that it is going to develop permenant scar tissue that is leading to this new deformity, and am terrified of further complications.

       The person who directed me to this forum has recommended I see a urologist specializing in peyronies, as general practitioners aren't nearly as experienced , and then told me to seek advice from those who are experienced with Peyronie's disease. So my question for anyone willing to share their advice, is could I have damaged the tissue enough that plaque will form and that is what is causing my penis to roll slightly over to the left and all that pain? And so should I desperately seek out a specialist for an examination, and ignore the other urologists claims that I am fine?

       I am only 19 and have never been self conscious about my curve, but this new tilt, and the pain from the injury has me terribly concerned and severely depressed from risk of permenant damage and neither urologist was at all helpful. I apologize if my original post was unclear and any advice anyone is willing to offer would be much appreciated.

[james1947]

Concerned patient95

Your symptoms are Peyronies in my opinion and if this is the case, you shpuld start treatment as soon as you can.
A good start will be VED (carefully not to over-pump), Pentox, 2.5 mg Cialis (if don't have ED) and CoQ10.
As the person that directed you to the forum said, you should see a Peyronies specialist as soon as you can.
Try to find out one close to you here:
https://www.peyroniesforum.net/index.php/topic,4063.0.html
Don't waist time, see a specialist as soon as you can and start treatment

James

[LWillisjr]

If you have always been curved then you likely have what is referred to as congenital curvature. We have a whole board dedicated to congenital curve.

It seems your new symptoms is that you 'feel' there is some damage to the base, but nothing has worsened. So it is possible that you could have strained a ligament, and that this could lead to some dull pain. Don't know if you were involved in what I would call rough intercourse, but lesson learned is that erections can be damaged. When I was younger I thought I was invincible.

At a minimum I would encourage you to monitor yourself to see if things stay the same, get worse, or get better. Is your erection hardness/quality still the same?

[Concerned patient95]

thank you for all your replies and help guys. This has been very difficult to deal with emotionally, and no matter how hard i try to relax, it remains in the back of my head all day.

I have an appointment with Dr. Alex Shteynshlyuger scheduled for Thursday, If anyone has any information regarding how helpful or effective he is. I read he is experienced with peyronies and has used both non invasive treatments, and surgical treatments to care for his patients. He is also approved to use xiaflex as treatment. I am from New York and all of the doctors recommended consultation fees range from 400-1000$ which only makes me feel more hopeless since i have no insurance. Im hoping at the very least this doctor will at least prescribe me pentox unlike the past two generic urologist ive paid out of my pocket.

Yes my left curve has existed for as long as i can remember. I am monitoring very closely in hopes of seeing improvement but sadly nothing to report other than the drastic reduction in pain. I still ache slightly and randomly, but not nearly as horribly when it first started. As i mentioned before, i was leaned on and my erection was pushed the wrong way, but not horribly enough that i I stopped or noticed symptoms right after it happened. As far as i can tell i am still able to get full quality erections and the changes are all in its shape.

All notable changes to me include the rotation towards the left both flaccid and erect, the dark patch of bruising just below my circumcision scar on the bottom left. A large bulging vein i believe to be a lymph channel on the left from the base to the mid shaft. an extremely prominent vein following alongside more along the top. I also noticed that there seems to be a pronounced pulse today at the base underside during my morning erection right below the lymph channel, and that the veins appear to be much darker when erect. also at the top of my penis is a very  thin straight line that never existed before the pushes through the skin, as if something was pulled the wrong way to tightly, and some structure is now bulging out through the skin.

Its hard to describe but if I were to hold my erection up straight out with my hand, that is what it looked like normally just with a curve starting at the mid shaft to the left. Now it falls over down and to the left. im completely convinced that there is some kind of damage in that area. the lymph channel leads into that darken bruised area, and that is the same direction my penis now falls and leans towards. im hoping that maybe could  just be a suspension ligament, but that bruising is discouraging me away from that theory. I also now realize erections arent invincible, and will be far more careful in the future. I can even live with this new deformity, although it will make intercourse more difficult.  im just petrified of the thought of complications and worsening of the condition. I appreciate all support and advice and will  continue to post any updates to my situation in hopes anyone else struggling with a similar problem can seek a resolution or answers. I truly applaud whoever created this forum and gave men with this rare condition a place to seek advice and help

[james1947]

Concerned

Personally, I didn't heard of the doctor you are mentioning.
The doctors that we know about in NY and the forum opinion about them are in the link I have provided in my previous post.
Let us know how this doctor is after you will see him.
Proposing you to read as much as you can on the forum regarding Peyronies treatments that members are using/used before the appointment.

James

[Concerned patient95]

An update to anyone keeping up with my story if they are suffering from similar problems. Im glad to report that i finally wound up into the hands of a very kind and competent urologist after my third try. The doctor carefully listened to all of the symptoms and changes ive noticed since i started experiencing pain. He even seemed to be the first to understand the new deformity of the twist and lopsidedness at the base rather than focusing on the curve i explained i had all of my life.

After his examination taking a look at the bruising, the angle and the bulging vein i have on the left side, as well as my photos of my erection he sat with me and my girlfriend and gave his opinion very simply of the situation. Although he claimed to not feel any plaque as of right now,  He agreed yes definitely, with my description of the pain i went through, I more than likely had some damage from trauma that is currently in the process of healing. He explained, and there is two things now to consider, what can happen during this process and what can be done to prevent it.

He then went on to explain that the tissues are now trying to heal, but if the body does not do an adequate job, then i will most likely develop scar tissue that can lead to a case of peyronnies if the plaque build up is large enough. He then noted that me being so young (19) and the fact that i am still able to get full erections, that im in a good place, that my body has a good chance to heal itself efficiently. He then, without me bringing it up once, began explaining the use of pentox, what it does to the blood stream, and how it can potentially encourage healing and stop the development of scar tissue. He wrote me a prescription without me having to ask for one. In response to me taking vitamin E supplement and Acetyl L-Carnitine however, he did say he personally doesnt believe it makes much of a difference, but to continue to take it if wish to.

Upon bringing up an ultrasound, he did advocate against it, saying that if it starts to worsen then yes it will be helpful, but as of right now I seem to be in an ok spot and it wont offer much or change a treatment plan. Offering some final words of encouragement that even though its a scary thing in a sensitive area, He doesnt feel any plaque currently , and im only 6 or so weeks into the trauma healing. That i need to trust my body to fix it and keep a close eye on it, and was the first of 3 doctors  to recommend i refrain from intercourse for a while. From the get go he seemed very knowledgeable and experienced with peyronies, far more interested and engaged in what i was saying than the other two urologists, as well remaining completely professional and friendly. I am very grateful to have found him and have his help and reassurance

Now another question for the experienced members on this board, what is the best time of day to take pentox, should i deviate from the recommended dosage, and is there anything i else i should know about the medication before i start taking it? The doctor assured very little risks or side effects, but i still feel i must ask others who are taking it what to expect. Thank you for all replies, and i hope my story can maybe help others in the future.

[james1947]

Concerned

Finally you got a doctor that cares and understand in Peyronies.
If you don't mind, post his name and contact data that others may benefit from him or send me a PM in the subject.
Regarding Pentox, I don't know what is the dosage he prescribed you, but in any case last one take not later than 6 PM. Take Pentox always with meals.
Regarding Vitamin E, we don't have too many (if at all) success stories using it for Peyronies.
I was adding CoQ10 for your treatment.

James

[james1947]

As an introductory, this topic is locked.
Please continue specific subjects on the adequate boards.

James