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23 Year Old Struggling With Peyronie's


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Dear Birgir, hello. My name is A, I am only 19 and I have had Peyronie's disease since I was 12 years old.

As a way to try and cope with my disease, I have researched it online in the past, but I feel a lot of the advice out there dosen't apply to me because it is directed toward older men. Therefore, what I see is the experience of people who are already married and have had sex before they had PD. That is not me. I am 19, not 45, so I have never been in a romantic relationship, and I have not lost my virginity.

Sad looking young man

Also, most of the stories I have heard are from straight men, so they involve relationships with women. Again, this doesn’t apply to me because I am gay. I only came out this past summer, so that's why I have never had a boyfriend.

In terms of how I got PD, let's say it happened when I was masturbating. Remember, at the time I was only 12, so I basically had no sexual experience whatsoever. In fact, I got PD before I even realized I was gay. I had no useful formal sex education until my sophomore year of high school, so at the time I did not understand that masturbation is a normal part of male puberty.

Therefore, although looking back I should have said something to my mom when I first got PD (it was painful), I understand why I didn't. I felt incredibly guilty about masturbating. I felt like I had just done something terrible, and I thought this was the price I was paying for it. No one had ever formally told me that masturbating is a normal part of being a pubescent boy.

Looking back, had I told my mom, she would not have judged me for masturbating. After I came out to her, she accepted me, but wanted to know the full story of how I had to come to accept my sexuality. As a result, I went to her house, and that is where I sat down with her and explained everything. During this conversation, we did talk about sex, and she explained that she completely approves of masturbation because it is the safest form of sex. Still, in retrospect, I had never been told by anyone that masturbation is normal, so I did not tell her because I feared she would judge me.

I didn't even find out what Peyronie's disease is until at least a year after I first got it, and even after I found out, I denied that I had it for years. Over the years, my PD has gotten worse, and now in 2016 it has gotten to the point where I fear it may be starting to affect my sex drive. Ever since I hit puberty, I felt like I had a normal sex drive despite my PD, and I have had many intense crushes, the type that involves being so sexually attracted to someone that you can't take your eyes off them. I have even fallen in love with a few of the boys I had crushes on.

I now haven't had any crushes like that since last July, and I feel my interest in sex is steadily declining, so I fear I am losing the ability to be attracted to someone. This is especially worrisome because I have just come out, so I fear I may have sexually liberated myself, only to lose the ability to love. I fear that I may never be able to be in a fulfilling, long-term relationship, and that I may never be able to lose my virginity. Yet at the same time, I also fear going to a doctor.

This is, once again, because I have only heard from the experiences of older men. These men are old enough that they are fully independent in terms of their healthcare needs. I am still in college, so I am still dependent on my mom for my healthcare needs, so if I seek any PD treatments, it will be a process that involves her finding out about my PD, and it could affect her financially.

Still, I am sick and tired of suffering in silence and I want to do something about this. That is why I am messaging you. I understand that my case of PD is not typical, that's why the advice that is out there does not apply to me. Therefore, I figured that if contacted some sort of PD expert and explained my situation to them, they could give me more useful advice that is catered to my circumstances.

I hope that I can one day have a fulfilling long-term relationship, and I hope that I can one day lose my virginity. I understand that maybe it won't be easy, but I refuse to give up hope, and I believe this is a first step in my healing process. Since I am 19, I still have a long life to live, and I can see many great things in my future. Therefore, I ask that you please give me the best advice you can. I know that maybe you have never heard of a PD patient like me before, but any advice you can give me will be very useful and greatly appreciated, thank you.

Sincerely,

A

P.S. for privacy reasons, I would prefer it if you don't post this on your website. Even so, any advice you can give me will be incredibly helpful.

Comment On John's Story

  1. Birgir December 9th, 2016

    Dear A

    Thank you for your e-mail. I want to start by emphasizing that I'm not a medical doctor (as stated on my website). I can therefore not advise you on medical issues, you will have to see your doctor for that. I can only advice you generally, as a "friend" and fellow sufferer. I'm linking to articles on my website for further information as I feel appropriate.

    First, it is very difficult for any man to get Peyronie's disease but I really feel for young men like you that are just at the start of their sexual life. However, treatment wise the advice is always the same, i.e. does not depend on the age, nor does it depend on sexual orientation. What differs in my opinion is the "emotional side", i.e. young men and older men can have different perspective and may deal differently with personal things like Peyronie's disease. Also, their support network may vary, i.e. younger men are less likely to be in a stable long term relationship.

    Saying that, it does not always mean it is easier for the older men. Many older men find it more difficult to talk about private matters than the younger ones. And not all long-term partners are supportive. The young men that I have been in touch with have many been refreshingly open about their condition and more likely to seek both professional help and personal support from trusted friends or family members… usually their mother. And in my experience, it is hard to find better support than a supportive mother.

    So my first advice to you is to talk to your mother. She already handled it well when you told her you were gay so I'm confident that she will support you in any way she can if you tell her about your condition. Her support will be very important for your both emotionally but also practically because as you point out she may need to support you financially so you can get medical help (I don't know which country you live in but assuming US or another country that does not offer free healthcare). This article is for Peyronie's partners, offering some advice how they can best support their partners with PD. Your mother may still find some of the tips helpful.

    Next step is to see a doctor. I know it may seem daunting but you need to get formal diagnosis and discuss with him what options are available to you. This article can hopefully help you to prepare for your doctor's appointment. Remember, this is his job, he has seen it all before and it is his role to help you but this is your penis so you are the one that takes all the decisions.

    You don't say anything about your condition, i.e. how severe your curvature is but you say the condition has gotten worse but you mainly talk about erection quality. You say you have had PD from young age which made me think if you might have congenital curvature (born with it) not Peyronie's curvature. However, if that is the case then the curvature should not be getting worse after you reached the stable phase. This is exactly why you need to get a formal diagnosis as some of the treatment options for Peyronie's curvature, like traction therapy, does not work for congenital curvature.

    There are number of treatment options for Peyronie's but your condition and financial circumstances will help you and your doctor to define the best options for you. I recommend you read my interview with Dr. Levine, he offers very informative treatment advice for men of all ages.

    This was the treatment part, which is the same for all men, no matter how old they are or if they are gay or straight.

    Now let's "talk" about how you feel and your sex drive. I'm glad that you now realize that masturbating is the most normal thing for men (and women) of all ages and especially adolescents. There is nothing to be ashamed about or should be punished for. There is not necessarily one cause for Peyronie's disease. If it happened to you during masturbation then it just happened that way. You are not being punished for masturbating, rather you were for some reason "vulnerable" for getting PD. It could have happened anyway, or when you started having sexual intercourse. The cause actually doesn't matter now, what matters now is what you are going to do about it.

    Loss of sex drive is something that needs to be addressed. PD can affect erection quality and if so then it needs to be addressed (one more reason why you need to see a doctor). However, it is not clear to me if your loss of sex drive is physical or psychological.

    It is understandable that you are worried about your future sex life. And your lack of sexual experience may contribute in making the problem bigger than it actually is. And that may be causing your loss of libido.

    Again, you don’t say how severe your condition is but I like to stress one thing… physical appearance is one thing, the function is another thing. Most men's penises are not perfectly straight. Actually most specialists agree that up to 10 degrees curvature should be considered as "straight penis". Men with mild or moderate curvature can still enjoy perfectly healthy sex life. Sometimes some adjustments are needed but it should not stop them from having a satisfying sex life.

    So if your curvature is mild or moderate you may want to try some form of treatment, e.g. traction therapy, to try to reduce it. Or you may choose to learn to live with it. The right partner will be fine with it as long as you are fine with it and you can enjoy satisfying sex life together.

    However, if your curvature is severe and making sexual intercourse impossible then you may need more invasive treatment, like penis surgery.

    I'm reasonably confident that your libido will come back when you have come to terms with your condition. So do your research, talk to your mother, see a doctor, start treatment (or not). This will help you to feel in control which will make you feel better about yourself. And when the time comes and you find the right partner I'm confident that your libido will return.

    There is though one more thing worth mentioning. Recent studies show that porn is increasingly affecting young men's libido. It has never been easier to access porn and it is easy to become addicted to porn. And porn can reduce the libido. I don't know if this applies to you or not but if it does then I recommend reading this article (actually I recommend reading everything he writes as all good 'food for thought' stuff).

    I hope this is some help but feel free to contact me anytime if you think I can be of any assistance. I wish you all the best in the future.

    Best regards,

    Birgir

    Ps.  I know you ask me not to publish this on my website for privacy reasons. I never publish anything under a real name and I don't believe anything in what you wrote will lead to anyone recognizing you. So I hope you will reconsider as I'm sure there are many other men out there (young men, virgins, gay, single) that would find your situation and my reply helpful. I have put a lot of work into my answer and therefore would like more to be able to benefit from it.

  1. A April 17th, 2017

    Dear Birgir,

    It's me, Anthony. I know it has been a while, but I would like to give you update with regard to my condition. First, I would like to clarify some details.

    1. To begin, yes I do live in the U.S.

    2. I know I didn't say much about my condition, so here are some details. 

    When I have an erection, my penis curves to the left, and there is a spot near the back of the shaft on the left side where I can tell it all started. My erections are not like they used to be, and I do suffer from erectile dysfunction. I also now have a series of bumps on my penis that I know where not there before, probably due to my condition. Also, I am uncircumcised and as far back as I can remember, I have not been able to fully retract my foreskin during an erection. In fact, recently, it does not retract at all.  I don't know for sure if this is related to my condition. 

    Most importantly, over the years I have suffered a gradual loss of sensation, and it reached it's lowest point last year, when I started to feel almost no sexual pleasure except when nearing the point of orgasm. This lowest point in my loss of sensation coincided with the decrease in my sex drive. Therefore, although Peyronie's has never been fun for me, the last 8-9 months or so have been particularly bad.

    3. I remember fondly that you mentioned the danger of porn, and saying it hasn't affected me would make me a liar and a hypocrite. Over the years, I have constantly masturbated to porn, and by now I am most likely addicted to it. I now masturbate multiple times a day, and to be honest, it don't react to it psychologically in the same way that I did when I was younger. In fact, it was while watching porn that I really started to notice my loss of sex drive, and the insecurity I have with regard to my penis size and loss of sensation only makes porn more tempting, for it seems that maybe if I jack off to porn, I can stop those factors from taking their toll. 

    Thus, I now have an idea of what may now be causing my loss of sex drive. I think it is a combination of my loss of sensation, which has hit it's lowest point, and the fact that because of porn, orgasming does not feel like it used to. I don't know for sure whether it is physical or psychological but I think it is a mix of both. 

    Now, with regard to my plan of action, I have decided that I will tell my mom about my condition this year. This is the result of two important experiences I recently had. 

    The first has to do with what I did when I was younger. When I was in high school, I used to brag and tell jokes with my friends about being sexually promiscuous, even though I wasn't. This was partly due to being in denial about my sexuality, but it was also due to the fact that I saw some of them being in romantic relationships, and it made me feel insecure because I was single. When I told my mom about this, she was puzzled by it, and pointed out that the majority of my friends are single, and that for me, as for many other people, it will happen in time.  

    After thinking about it a little while, I realized that she is right, but that her advice does not apply to me because she does not know about my condition. I realized that the reason I feel insecure when I see people in relationships, or that I brag about my promiscuity, is not because I am still single, but that I fear I always will be. In other words, I'm not depressed about the fact that it has not happened yet, I'm depressed about the fact that due to my condition, and now my low libido, it may never be able to happen. 

    The same holds true for my virginity. When my best friend lost his virginity, it was painful for me, not because I felt sorry for him, but because I fear I may never be able to have sex, and it reminded me of that fear. 

    The second experience I recently had that has made want to talk to my mom was when I recently red John's story from May 2014. The similarities between his story and mine could not be more striking. He got Peyronie's disease when he was 13, I got it when I was 12, and he is only a few years older than me. Like me, when he was younger, he was embarrassed to tell his parents about his condition. Nevertheless, what gave me the most hope was finding out that he was able to find a partner and lose his virginity, dispute his condition, for it made me feel that there is still a chance for my future love and sex lives. 

    Thus, these two experiences have given me the motivation to tell my mom about my Peyronie's disease, for not only would she understand the true cause of my insecurities, but it may also be the first step to achieving my wishes of restoring my libido, having a healthy, happy sex life, and finding the right partner. 

    The only problem is that there are some fears that I still have with regard to telling my mom about it. The first of these is what her reaction could be. I am afraid that she might be judgmental toward me for not telling her sooner. I am also afraid that she will be devastated by the news, and that she will be pitiful or overly pessimistic about it. The very idea of her having a strong reaction of any kind scares me, even it is not realistic.

    The other fear that I have with regard to telling her is the treatments for my condition. Not only am I afraid of surgery, like John, but I am also not fond of needles, so the idea of having anything injected directly into my penis scares me. On top of that, since I am also dependent on my mom financially, I worry about how the treatments could affect us in that respect.

    Make no mistake, I will tell my mom about my issues in near future, but it would mean a lot to me if you could give me some advice going forward. 

    Best wishes,
    A

    P.S. I know I originally said I did not want my original message to you to be published for privacy reasons, but I have changed my mind: go ahead and publish it. Not only would it be nice knowing my story helped other people the same way John's story helped me, but it would help me to see the responses of other gay men, young men, virgins, or single men to my story in order to help me cope. 

    • Birgir April 17th, 2017

      Dear A

      It is very nice to hear back from you and I’m very pleased that you found John’s story helpful (and I know he will too so I will e-mail him and tell him). And thank you for being willing to share your story too (anonymously of course) as it may help someone else in the future. I will publish your story shortly (I will e-mail you the link when done).

      I’m also pleased that you are (almost) ready to talk to your mother (and to see a doctor and seek a treatment). I have already linked to the articles on my website that I believe are of most help to you regarding treatments but in my opinion the first thing to address is your erection quality and then the curvature. It depends on how severe your curvature is but hopefully non-invasive treatment like traction therapy may help (safe and relatively cheap treatment option). And if the curvature is mild and not interfering with sex life as such (i.e. “only” cosmetic) than one option is to learn to live with it (I know that may not sound like an option to you at this point but still it sometime is).

      However, the first step is always to see a doctor and discuss your options with him.

      I can very well understand that you find it difficult to tell your mom about your condition. This is such a private condition. Many men find it difficult to even talk to their sexual partners about it (as they can hide it from them!).

      I can also understand your concerns about her reactions, especially any strong reactions. That’s not what anyone needs under those circumstances. So you are right to prepare yourself before telling her. Like you, I’m sure “it is not realistic” but it is always good to be prepared for every scenario. Just in case.

      She is of course likely to be devastated by the news. Every good parent is devastated when something is troubling their children. And she may at first be “cross” that you didn’t tell her sooner (it is a normal human reaction when we get scared).

      But I’m sure she will soon realize that this is about you and her role is to support you in this. Because this is about how you feel, not about how she feels. Gently remind her of that if needed. And just be yourself with her. Be open with her, tell her how you feel. Communicate. That is always the best approach to anything in life. Share with her your concerns, i.e. that you don’t want her to be overly pessimistic or optimistic. That you just want to have her by your side when dealing with this. And I’m sure she will appreciate that (we all need to be needed).

      Be ready with some information for her, e.g. explain what Peyronie’s is and what can be done. Even give her some website links so she can do her own research. Tell her she can contact me directly if she has any questions or even if she just wants to vent. I have been in touch with few mothers over the years and believe me, it is hard to imagine better advocates then them. They are ready to fight for their boys and tend to be amazing support to them.

      And I have the feeling your mother will be one of them. Because your thoughts and approach is very mature for your age, e.g. being concerned about the financial implications. Which makes me belief that you had a solid upbringing.

      I’m confident about your future. You are obviously clever and mature young man and that are very attractive qualities. As the saying go (rightly)… the brain is the biggest and best sex organ. Like John, you have all the chance of finding love. And I’m confident you will when your time comes.

      In the meantime, do your research, seek any support you can get (confiding in your mother may be the best support you can get) and get ready to seek professional help (doctors have seen it all before and then some). At the same time, also concentrate on other good things in your life, your friends, family and not least yourself.

      I hope this is of some help and I hope you will keep me posted about your progress. And you know where I am if there is anything that I may be able to assist you with.

      Kind regards,
      Birgir

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Hello, I'm Birgir

This website is based on my experience of Peyronie's disease