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Paid Research Study for: Peyronie’s Disease, Dupuytren’s contracture, frozen shoulder or Ledderhoses Disease.
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23 Year Old Struggling With Peyronie's
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.
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.
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.
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