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I Wonder If Any One Will See This.

When I was born, the doctors noticed something odd.  I seemed to have only one testicle, and it seemed damaged.  This is not entirely unheard of, as sometimes the testicles don't completely descend, so they told my mother that a surgery later in childhood could be performed to find and pull down the other testicle.  I had this surgery at seven, and they found nothing during the operation.  Not one damaged testicle, not one healthy one.  I was diagnosed with bilateral anorchia, also known as vanishing testes syndrome.  The condition is not life threatening, but does leave me infertile, and I was only able to go through puberty with the aid of HRT testosterone shots which I have to take for the rest of my life.  This isn't even the worst part, it's the psychological dilemma.  The feelings that I am "half a man", that my penis is inadequate, and the worry that people will find out, or know, and think less of me, or that I am a freak.  I never had one date in high school because I didn't want to risk giving in to my hormones and being found out.  I started dating a little in college but never got serious with anyone.  There was one girl who I was getting serious about, and I told her.  She seemed fine but lost interest in me shortly there after.  It was years before I had the heart to ask another woman out, and it was through tremors and tears I told her I had no testicles, fearing rejection once again.  She accepted me and we are now married, but this condition affected every relationship(or none-relationship) I ever had with a woman, and affects how I act around friends and family.  I constantly fear that I don't satisfy my wife sexually, and I hate my own insecurity.  This is my life, there is no cure, there is no magic pill to increase the size of my penis, there is no testicle transplant surgery that would allow me to be a normal man.  This is my problem, and if it is your problem, you are not alone.

bigredrassler bigredrassler 22-25 9 Responses Aug 5, 2009

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Hi guys! I am the mother of a son with anorchia. I just wanted to share a link I published on my blog "Hope for Anorchia". I am very hopeful about the future and I am always looking for articles that are related to our condition. I thought you might want to check out this link:<br />
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http://hopeforanorchia.blogspot.com/2011/07/interesting-article-about-turning-stem.html<br />
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I would also like to invite you to join our Facebook Fan Page: <br />
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Anorchia<br />
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It is really important to have a group because together we can bring awareness to this condition that desperately needs more research. Also, we need you to give emotional support to fellows like you and to parents of sons with Anorchia. Your experiences are highly appreciated and this journey would not be the same without you,<br />
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Thank you!

I am 17 and currently enrolled in High School right now. When I was 12 years old, just five years ago, the doctor and my parents told me that I had Anorchia. When I was 13 I got implants. I take hormones, and i feel, look, and am a normal kid. I have come to peace with my condition. Sure, it sucks, but this is who I am. I have to accept that. I do sports and shower without anyone noticing or saying anything. I have never told any of my friends, and don't think I will for the same reason as japertas, it's not their burden to bare. I have dated a few girls and am currently pretty serious with an amazing girl. For the longest time I thought i would never have to tell her, because we would go our own ways before things got to serious. When I had fallen for her pretty hard, i felt obligated to tell her so that she knew what she was getting into. I was very nervous, I drove her to the park, and she knew something was wrong. I didn't tell her everything. I figure that she only needs to know what would effect her. (I would like opinions on whether that is the right thing to do or not) but i only told her that with me, she could never bear my children, but she could still be pregnant, have her own children, and i would be their father. She was very sad, but very loving. We both cried, but she said that even though it would make things different, difficult, and scary for her. She still loved me, and wouldn't leave me because of that. It's been close to a year now, and she still loves me, we still cry sometimes. I can bear my condition, but i am really very desperate for advice on how to comfort her, and how she can become pregnant still. I'm really grateful for all of your comments. I have thought i was all alone for a long time. After reading other peoples situations, it's good to know that there are others who can relate to me.

Thank you for sharing. I have a 8m old son with anorchia, he will receive implants before puberty and have testosterone treatments. My biggest fears from the start have been what it will be like for him as a teenager and beyond emotionally. Your story gives me hope that while he will have his burden to bare, he wont be miserable, that he will be able to find acceptance and love.

Hey I have it too. <br />
I made a separate post on the group that bigredrassler started. Thank you man for having the courage to start this group. Honestly, I get so embarrassed just thinking about my prob that forming an online group never crossed my mind. <br />
I can relate to all you guys' issues, I am lucky to be with a loving gf right now, who gives me all my confidence, but who knows how long that will last?

so do i<br />
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My life story is exactly the same as japertas. It's good to see I'm not alone with the problem. The only persons in the world who know about it are my parents. Not even my older sister knows...

My 8 year old son was diagnosed at 1 year with bilateral anorchia. I have not talked to him about his conditon yet. I don't know what to say. I don't even know how to help him, not being a man. Please help me.

I can see where you are coming from Japertas. I have considered implants myself, and of course I want children (I think when it is not an option, it makes you want that more). We are going to adopt, and possibly foster as well, but a part of me is waiting for the time when cloning experiments can be performed on humans and I can pay a scientist to clone my genetic sequence into a ***** cell and inseminate my wife. A bizarre fantasy I guess, but still one I hope for. I have told none of my friends, though living with this condition as a secret feels immature to me, like I am ashamed of something that is not my fault. Thank you for sharing your story.

hi, my name's Japertas, and I have anorchia (chorus: "Hello, Japertas") :D<br />
Seems I have finally found someone struggling with the same impalpable problem (pardon the pun, it's just my nature). First part of the story is the same as bigredrassier, I had to go through all of the stages, surgeries, next of which, btw, is coming next month, when I'll be receiving my implants (woohoo, all my savings down the scrotch).<br />
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During my life I've been ignoring my condition completely, like having a complete mind block, I was somewhat conscious about my appearance, so I never flashed it too much, but at the same time it never bothered me, and I would always sneak out from uncomfortable situations. My only concern all the time was whether I could have a child of my own, because I still had a miniature piece there, which was my 'hope' all this time. Until just recently almost a year ago, when the doctor told me I should forget about that. Then it hit me, that there's just nothing to be done, that I could have a 'normal' family life. <br />
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I would not talk about this to my parents, because I dont feel like they can have any understanding about it, and again, I don't feel like I need their support. I would however sometimes speak about it to my elder sisters, then again, both of them have babies, and I really dont think they could understand much of what I'm going through (again, there's nothing too dramatic about it, it's just that when you have something on your mind you try to talk to other person). So basically my condition is known just to the closest people (and doctors of course :).<br />
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As for unveiling this truth to my friends, I just don't feel like I should burden them with it (although maybe in 10 years time I'm gonna tell this to a selection of best friends). I feel at the same time it's kind of self-centric that you feel like other people need to know about you... It's just how I feel.<br />
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To repeat myself - my tactics is ignoring my condition. Looking into the future, I was even thinking of artificial insemination, pretending that 'everything is alright', and not revealing my future wife that I have 0% fertility. Then again, I would come to this dilemma whether or not I should involve a woman of my dreams into my twisted plot (again, just to save her from suffering), what's more, maybe I should not think about marriage at all, spend the rest of my life having different partners, without settling. As for children, I love them, yet adopting a child, when I can hardly accept my infertility, would be a mistake, from one perspective - majority of the ladies want to get pregnant (it's healthy too :) and I don't think I could provide the best conditions for the child.<br />
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I feel about my condition as emptiness: there's nothing positive about it, you cannot make this weakness into your strength, and I feel I don't have the right to impose my misfortune to anyone else, especially the loved ones... Of course I probably may be wrong, but seeing happy parents, even in divorced families, single mothers taking care of their children, makes me keep it to myself only... I even think sometimes, which woman would be more unhappy - the one who conceived a baby from an undesired man, or the one who has no chance of having one.<br />
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that's just my 0.02 cents, I'm not imposing anything, and I feel that I'm on the gloomy side here, but as I didn't have a chance to know how it feels to reveal my problem to a stranger, at this moment I feel my reasoning has some points to consider.<br />
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And yeah, you're not alone ;)<br />
sorry in advance for starting my philosophy instead of sharing some practical experiences. Maybe next post..

I also deal with depression, but I am bipolar as well so I don't know how it ties in. I do remember that when I was young, my mom told me no one would notice when I got old enough to start showering in gym, she was wrong and I was harrassed and called cruel names. But I never did anything with women, so I don't know if a woman not noticing is unusual or not. Thanks for letting me know I am not alone. Feel free to join this group or add me.

I have anorchia also.<br />
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My story is quite similar, but i didn't get married ;). I had some girlfriends, a pair of girls that gained my confidence.<br />
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I allways needed to tell them the story. The nicer thing I've been told was "after all I don't want you just to have children with", I was crying because of the explanation.<br />
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I also got surprised when a girl I invited to the movies, and then to eat something and who ended sleeping with me in the same night told me she didn't notice the matter.<br />
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(These are like consolations for my selfcritical "halfman sense" being).<br />
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I allways worry about the psycological dimension of this characteristic of myself, because I allways have some periods in with I feel just unmotivated. Like apathy. A month or two and then I can be happy again, even too much. I don't know why I think both things are related, specially with my hormones treatment. What do you think? Have this happened to you? It doesn't appear on the characteristics of the syndrome, but they allways suggest psychological support.<br />
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I don't know, I allways wanted to talk with someone else with this problem. Now it's an oportunity, but I have not much more to say for now. Except I'm curious and I would like to have a conversation with other with this issue.<br />
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Thanks for sharing.