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Author Topic: 7 years with Peyronies Disease, finally going to take action  (Read 1048 times)

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The Viking

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After creeping around this forum for the past couple years, I’ve finally decided to introduce myself and start seeking advice. Thanks in advance for anyone who takes the time to read, especially since I’m very verbose and this is going to be an essay ;)

I’m a 33 year-old single gay man whose suffered from untreated mild Peyronie’s for +/- 7 years. The reason for the duration is essentially a combination of three factors: 1) I have always had some congenital penile curvature (my penis tilts slightly clockwise, and my erection has a mild upward curve; 2) I’m somewhat of a hypochondriac, and have a defense mechanism wherein I force myself to believe that problems I perceive are either not a concern or don’t exist entirely; 3) since my diagnosis, I’ve not sought treatment due to indecision as well as advice I received that I not treat it at all.

My symptoms first presented themselves as an hourglassing just above my circumcision scar when my penis was flaccid and the skin was constricted (eg in the cold air.) The hourglassing wasn’t present when the skin was relaxed, and would inflate when I became even semi-erect, so I dismissed it as “shrinkage.” Slowly, over the course of a couple years, the symptoms increased in number and severity as I began noticing a slight curvature to the right and a coinciding kink on the right side of the shaft while flaccid, and eventually, the expression while erect. The deformity finally became too clear to deny, and I realized that something was actually wrong.

After a year of fretful self-examinations, second-guessing, rationalization, and confusion, I finally went to a urologist. I saw Dr. Peter Stahl at Columbia after doing my own research and seeing him mentioned on this forum. Dr. Stahl diagnosed me with mild Peyronie’s - a 15 degree curvature to the right and a slight indentation on the right side that all but disappears when I’m erect. His resulting assessment was all at once comforting and disappointing: he essentially dismissed it as non-concerning. He went on to remind me that everybody’s penis is different, that it would be difficult to impossible for any new partners to notice that there was a problem, and that even he had doubted that I had Peyronie’s until he saw the plaque on the ultrasound. He advised that surgery was “1,000% out of the question,” and that I could try traction if I really wanted to seek improvement, but he felt it wasn’t necessary. Essentially, his advice was to accept that my condition is inconsequential and move on. I was a bit shocked that a purported Peyronie’s expert had dismissed my condition - which I had learned was a sign of an uneducated physician - but his status gave the advice credence.

And so I attempted to move on; you can imagine that it did not go well. After 2 years of continuing to fixate on my condition, I finally decided to seek a second opinion from a sexual health urologist at NYU - Dr. Joseph Alukal. He was frank, but thorough and generous with his time. He listened patiently and intently, and was very detailed in his responses and explanations. He did agree with both the ideas presented previously: that it would be reasonable not seek treatment if I was comfortable with my condition; that it would be virtually impossible for a new partner - even of the same sex - to detect an issue. He did, though, support my seeking treatment, but noted that verapamil or Xiaflex would be difficult to use since my plaques are small and impalpable. But what totally threw me for a loop was that he said I was an ideal candidate for plication surgery - this after Dr. Stahl said it was out of the question. His description of his experience with plication echoed what I’ve seen others write about Dr. Levine’s: that basically every surgery he’s conducted has been successful, had a high level of patient satisfaction, and been simple and almost devoid of side effects. I was totally unprepared to hear this advice, so after asking him a number of questions, I told him I now had lots to think about and would follow up soon. Even though I felt better about his demeanor, I was now completely confused.

For three years, I have been obsessed with my Peyronie’s. I think about it every single day; some days are better and I’m able to forget about it temporarily as I focus on other aspects of my life, but other days are overtaken as I fixate on it. My productivity has suffered profoundly, and I sometimes lose hours of work, or delay and even cancel plans because I’m distracted by thoughts of my condition, endless self examinations in the bathroom mirror, or online research. It’s prevented me from dating, and I’ve cast aside or subconsciously sabotaged the handful of opportunities with men that have fallen in my lap. And of course, through all of this, it’s caused immense anxiety and, lately, depression.

I’ve come to a point whereat I must do something about my condition - whether it be psychological, medical, or both - so I don’t emotionally implode. And so I decided to start by writing this introduction in the hopes that being honest about my story with this community would make me more comfortable with facing my problems and actually working toward a solution rather than just fretting endlessly and aimlessly.

I seem to be faced with three basic choices: acceptance, stretching (perhaps in combination with supplements), or plication surgery. Apprehension and indecision have so far paralyzed me into doing nothing, but I have to start something. Are there men - especially single men - with mild Peyronie’s who have chosen to be comfortable with their condition and moved on? If so, did they get help from a therapist? Are there men who have found success with traction that wasn’t begun until the stable phase? Have most men on here who have had plication been satisfied with their results after fully healing? I know I eventually should pose these questions in their respective discussion boards, but I thought I’d start here, even just rhetorically.

Again, I send a huge thanks to anyone who reads this. This forum provides an invaluable service by creating a community of support, advice, and information exchange, and even simply writing this introduction has made me feel more comfortable and ready to handle this disease. Thanks again to you all, and hopefully I’ll speak with some of you soon. Best wishes to all.
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Thomas2

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Re: 7 years with Peyronies Disease, finally going to take action
« Reply #1 on: July 18, 2018, 08:55:48 AM »

Dear Viking, most of the people went through something like this. Sorry if i answer you with an essay back.

You can't share with us the problem without giving these informations:

How big is the noticeable scar?
Do you feel pain?


Sometimes we litterally transfer emotional problems to the penis, which is like a beacon for self image and identity. We sometimes enter a loop hole in which we project our relational and emotive problems to our penis and vice versa. Nobody that go through some problems like this on their penis, will ever be the same person. This, you can't change. Personally i think, also, that we are never the same person we have been, that life is about change. You can fixate and force yourself to let nothing change you, the way you see at things, the relations you have... but life ultimately will change everything, always.

You did not share with us if you feel any pain. The trigger to all my inscurities and anxiety and exceeding selfawareness always start when i am in pain. If i feel pain or disconfort, i can't distract myself. That's my real enemy, right now.

I wish you could think this: if you went through 7 years with no change, and if you have a really slight bend of onloy 15%... there is people that have a 40% and more natural curvature, and they fuction really well nonetheless. A small curvature it is not a problem, it is a feature: you reach points inside the rabbit's hole.

Also in first 3 lines you told us: you always had a congenital curvature, you are hypocondriac. So the answer is easy: If you have to constantly transfer your emotional problems to something, the penis is the most tragic one because seeking treatment for something that you don't have, will lead to the problems that you seek to find. And you will ALWAYS find doctors willing to believe or tell you that you have that problem and offer you treatments. Always. Because not all doctors are sane or good people. Many doctors want to sell you procedures.

So if you don't have pain, you don't have Erectile Dysfunction, you only have a nicely and favourably bent penis that can give you pleasure.

Yes, it may in time get worse. IT MAY, it's not certain. you don't have any proof that it's going that way. Why are you fixating on this? Snap out of it, if you have to fixate on something, start believing you have headache or that your knee hurst, or something.

Of course, in the eventuality that you actually have a really really mild peyronie, here's what you only should worry in the near future: Never ever have sex without a full erection, never stress your penis too much, and if you are over the acute phase, you have the right lifestyle, it might aswell never come back.

You can make treatments before it is a problem, but don't do anything that can LEAD or CAUSE damage to penis. Many treatmens like traction ved or even verapamil and xiaflex, can do harm if done uncorrectly. Why expose yourself to the risk if you can have sex and you can't be shure if you have or not a problem?

The question is, if yuo penis changed in time, can you accept change? Sometimes change is forced on us, you can only adapt. You are lucky to have been forced to adapt to something which doesn't impede you with anything at all. If you keep yourself obsessed with the penis in this, either you have not told us and the doctors something, or you are using your penis problem to avoid other problems.

Doctors won't ever be deep in explaining you things that they don't question themselves either. Your mind it's what you should be working on, rather than your penis.

Either you have peyronie or not, you will find that i peyronie community, you are not alone in this pit, in this dangerous zone where you fall into time to time. But your penis work fine so why fixate on the change that happened until you find a doctor that says ok we make surgery? Surgery will make it worse if you are not dealing with something that don't let you to have sex already. Oral treatments, at your stage, it's what is safe! Expecialy if there are no signs of this getting worse! You told us yourself, your problem is only that you can't stop thinking and worrying about your penis (which might be simbolic way you have found to worry about yourself?), but now you are here wondering if going for a surgery it's the solution? Buddy if you have surgery, you will be doomed to constantly watch and wonder and question your penis... ALL YOUR LIFE! it's not like you will have surgery and BOOM you won't have to think about your penis ever again... it's exactly the opposite! plus you will go through pain!

Find something to do that is not potentially dangerous to something which is perfectly fine. And start ask youserlf: why did i let this influence me this much? Am i being cautious or am i searching help in general? Have i to deal with something that is likely to get worse or have i all the time to softly and cautiously treat it with treatments that don't risk to make it start again? Most people don't realize that penis injuries are really frequent, and that not all scars are peyronie's. Sometimes scars are scars, and don't lead to more scars in a neverending cycle. So in my opinion, don't do anything drastic, don't let problems be a problem until they are a problem, and i hope you find some space to start wondering if your worries are related to the scar or where there even before that.
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The Viking

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Re: 7 years with Peyronies Disease, finally going to take action
« Reply #2 on: July 19, 2018, 12:08:17 AM »

Thomas2,

Thanks very much for the reply - I'm glad to engage in the community so soon after writing.

First, in answer to your questions: I don't recall feeling any noticeable pain during the acute phase, although I do feel some mild soreness occasionally now; I have two small narrow plaques on the dorsal side of my shaft that are very difficult to feel.

If I'm understanding you correctly, you may be questioning whether I actually have Peyronie's, or if my hypochondria is once again at play. Certainly hypochondria is an issue for me, and as I mentioned it's one of the reasons it took me a long time to understand that I had a problem. However, I can tell you that I do have Peyronie's disease, as I was diagnosed by Dr. Stahl, a Peyronie's specialist at Columbia, after a full exam that included a chemically-induced erection and an ultrasound.

You've touched on something very important in your response: that the mental and emotional aspects of my Peyronie's are perhaps the most problematic for me. Anxiety, fixation on my problems, and poor body image have always been issues for me, and Peyronie's capitalizes on all of them. I think it's powerful and insightful too that you point out that my obsession with my penis is almost a metaphor for all of my anxieties - that I'm assigning them all on this one aspect of my life, like a symbol for all my problems.

Certainly, one of the worst parts of my Peyronie's is the feeling of embarrassment and entitlement I experience when thinking about how mild my condition is compared to so many men out there. In fact, Dr. Stahl explained to me that the reason surgery was out of the question was because the goal of surgery was to make men with severe Peyronie's look as good as I do now. Unfortunately, these kinds of advice can be problematic in the same way as trying to help people with depression by reminding them of the many bigger issues burdening other people. Rather than the intended consequence, which is putting things in perspective, it increases the feelings of futility and hopelessness as they struggle with a disease that "should't be happening." For my own part, it's fairly similar - the thought that I shouldn't be bothered by this just adds another layer of anxiety as I continue to worry about it, knowing all along that my worry may be unfounded.

Although I only have a 15 degree curvature, it's all the deformity I've ever experienced, and so in that way, it's severe to me - that's why I feel that I have to do something about it. I know that seeking help for the mental and emotional aspects of my Peyronie's may prove to be the most important aspect of my treatment, but will it alone be enough? Stretching and certainly surgery come with a great many risks and side effects, but the success stories from both reputable doctors and men on this forum are too attractive to ignore. These are the choices I'm wrestling with that have brought me here.

Again, thanks a lot for your insights, and the time you took to write your response. I look forward to having more of these conversations with you and others - best,

Viking
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