Seeking Men With Anorchia For Personal Opinions.

First of all, love all you loving mothers with son's with this condition but I am looking for the men's opinions on this one, not the mamas.

My son is only 9m old but I deal with stress better when I feel prepared for the future.

My First Question: If you had implants what age did you get them? Were you happy with that age? What age do you wish you would of gotten them?

Second Question: what age did you learn you couldn't have children? Were you happy with that age? At what age do you wish you'd been told? How did the conversation go? What if anything would you of changed about the way that conversation went?

Third Question: Do you have siblings and if so how much if anything do they know about your condition?

Thank you in advance for all those that respond. I value your opinions greatly.
MrsLifeG33k MrsLifeG33k
26-30, F
7 Responses Jan 19, 2013

I may be a mother but my son is 18 years old.
1) he has had no implants ever. At first he watched austin powers and didn't want metal balls clinking together I explained it was a movie and he was adamant. The doctors never did get him to change his mind
He says if his partner can't accept him for who he is then hell with them
2) he took hrt during ages 13-17 refused before and after. Says he doesn't want it. Doesn't care if he doesn't have manly voice or about sex.
3) I don't know if he is straight to gay or bi. I think asexual.
4) he has known his whole life he was sterile. When he was a toddler and said when I am a father I told him that some people can have kids of their own and some can't . He was meant to rake care of other kids that other fathers didn't want to or couldn't take care of.
5) most adamant NEVER let kids find out about it. He was always afraid one of his siblings were going to get mad and spill his secret.

Question 1. I'm currently 17 and I didn't get implants. I can't say I'm happy because it's not the true. Having anorchia sucks, and you feel like a ****! Think that your son won't be as happy as you were when he was born. No-ma'am, it won't happen! I think you shouldn't get implants only because society wants you to be like anyone else! <br />
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Question 2. I learned I couldn't have kids on my own in my early teens, at 11 years old more or less. My mother thinks I'll be able to have kids and she's not throwing away clothes "for when you'll have kids!" as she says. I wish I didn't know, because this way I

Q1 I did not get implants
Q2 About 10 yrs old. Im not sure I really understood fully then. I sort of just put it on the back burner. Im 20 now and in love and she wants nothing more than to have kids eventually. Obviously she knows about my condition but has a lot of questions, many of which I was told the answers to about a decade ago. Its a good first age to know but should probably keep up to date with.
Q3 I have an identical twin brother, he knows just about everything about my condition.

I hope this was helpful, I feel rather like a unique case........

Thank you for sharing

MrsLifeG33k, I have anorchia. I am now 68 years old and have had a wonderful life. I had a terrible doctor in my early years (birth to about 10) but then my parents found a great urologist that helped me cope. I was aware of the problem from about five years old. My mother was not very confidential.

I started HRT at 13 and had implants at 14. I played highschool sports and had a normal childhood. I was 17 when I learned that I was sterile.

When I was 35 years old I had a doctor tell me that testosterone therapy caused prostate cancer and took me off of the HRT. As a result I lost most of my libido and suffered some bone density loss. I struggled through those years but later (10 years later) found another doctor that told me it was non-sense and started me back on the HRT.

I married a wonderful woman when I was 22. We are still happily married and still have an active sexlife. We have raised two adopted children and now have two grandchildren. I feel blessed and consider anorchia just a bump in the road of life.

Thank you for sharing your story with me, it brings joy to my heart to read all your positive life experiences despite your condition. My son is now 14m old, and already since my original post I feel more confident about my son's future and I hold on to the truth "its only a big deal if we let it be a big deal".

I am sorry to hear about your situation. As a parent it must be hard. I don't have Anorchia but I was rendered sterile due to a childhood illness. I think what was most frustrating to me as a child was that the adults in my life knew something about me, and they were not telling me. Kids will pick up on this sort of thing. It WILL affect them.

My parents reasoned that it would be best not to tell me anything and let me think I was normal as long as they could. As I was fully aware that there WAS something wrong with me, and I knew my parents were not telling me, this actually made it a lot worse.

I would very much like to have been told what the problem was early on. The simple fact is, the younger a child is when exposed to new ideas and new concepts, the better they are at processing that information and coping with it.

My experience is that parents delay telling their child because of their own comfort level about the situation, they really are not concerned about the child's reaction. Just their own.

They worry the child will blurt it out to the wrong person and embarrass them. They fear the questions that the child will ask, making it uncomfortable for the parent to answer. The parents put it off simply because the parent is not comfortable.

Tell your child early and often, and your child will have no problems understanding and coping with their situation. Let him know he is not defective or flawed. It is just the way he is, and there is nothing wrong with that.

Telling the child for the first time will be hardest for YOU the parent, but it only gets harder for both of you, the longer you procrastinate about it.

My parental trust is damaged because my parents chose not to tell me until after all the damage was done.

Be a trustworthy parent and tell the child what he needs to know. Do not damage your relationship with your son because it is difficult for you to talk about. You'll be surprised what he can handle.

To this day the topic is incredibly difficult for me to talk about with my parents. At this point, my questions are just too pointed for them to be able to address. It is my parents who shut down when I bring up the issue. They are incredibly embarrassed by it. They are ashamed.

I really do not know if they are ashamed of me as their son, ashamed of my condition, or ashamed of the way they handled it, but they are ashamed.

Don't let shame make your decisions for you. Explain it to your boy, and be forthright about it. Do not make it a family secret. Those only tend to get worse and require more and more lies over time.

Be open with him about it, but you can also let him know that like with what happens in the potty, it is not something he needs to tell everyone about. It is natural, but it is also private. Just don't make it into something so big and scary, that he has to learn about it on his own, because you won't be honest with him.

If you are thinking about keeping this a secret from him "until he is ready", then I think you are making a huge mistake. You are only delaying it until YOU are ready. And, that isn't fair to him.

Thanks again for your post. I sincerely wish both you and your son all the best.

Good luck to you both.

Thank you for your insight. I'm so sorry for the way things happened for you. We are definitely not ashamed of him. All my immediate family knows about his condition and quite a few friends. I'm not embarrassed to talk about it, but sometimes I fear he will be upset that so many people know about his condition and HE will be embarrassed, because while its not a secret, it is private and he deserves privacy. Im actually going to be seeing a psychologist to help with the words and language to use with him while he is young. Our urologist also suggested small bite site bits of information periodically as he gets older. I dont want to keep this from him, the last thing I want is this huge shock to his system when he is 10 and has to start his testosterone treatments. The hardest part is trying to image how I would explain something so complex and so mature to a 3year old...a six year old... so that when he is 10 he gets it. I dont want to burden my baby, but I do want to tell him the truth as soon as possible. I think this appt that I have coming up will defiantly help.

Here is the important part. You will find it difficult to talk about because it is something in his pants. If it were a hand or a foot he was missing, it would be much easier for you to talk about. There would be no question that you would be able to talk with him freely if it were a hand he didn't have.

At a very young age, he won't see the taboo distinction that you do, be it a hand, or something in his pants, at age one or two, it is just how things are for him. You absolutely CAN talk to him about the differences between boys and girls, and the difference between him and other boys from pretty much the time he begins to speak and form his own sentences.

I am sure it would be as easy as you want it to be. During bath time you could simply start by saying, "You know, when you were born, you were made very special. Most boys have these parts down here, but you aren't like all the other boys."

Simply start with the concept that he is a little different from other children. It is a good start for him to know that he is special, and what makes him special.

When he gets a little older, and the inevitable question, "Where do babies come from?" arrives... usually around age 4 or 5... You can respond with, "Well, babies come from all sorts of places. Some are made by mommies and daddies, and they grow in the mommy's belly. Sometimes the daddy carries a seed, and that seed grows in the mommy. Sometimes babies are adopted from other mommies and daddies. Some people can make babies, and some people can't. Not all girls can make a baby, and not all boys either. Remember how you are special? Well, part of that means you can't make a baby. Not everyone can, and that's okay. Mommy was very lucky that she could."

If the question of, "Why can't I make a baby?" comes up, then you still have a lot of explanations that a young child can understand.

Something like, "Everybody is born different. Some people have blue eyes, some people have brown. Some are tall, and some are short. Some people can make babies, and some people can't. I knew when you were a baby that you were special, and I'm very proud of you. If you really want a baby when you grow up and meet the right person, then you can. Just because you can't make a baby, doesn't mean you can't have one anyway."

You'll be shocked how a simple and straight forward answer will satisfy him, and give him the time he needs to process this information as he grows. You don't want him to be 9 or 10 years old, and have this all dumped on him in a doctor's office. Better he has the parts he needs available to him all along his developmental path.

You don't have to get into the nuts and bolts of the endocrine system for him to understand.

Remember, the taboo feeling, and concerns you have about his embarrassment are entirely your own... NOT his... at least, not yet. He does not need to feel embarrassed or ashamed about his condition. He doesn't need to feel like it is a secret he must hide at all costs.

Yes. Your son deserves privacy. Explain to him that this is private, and not to be discussed in public, just like you don't discuss bowel movements in public. Just don't cross the line that he thinks he should never tell anyone, because it is somehow shameful or shocking.

Everybody poops. Not everybody can make a baby. It is just a part of life. Some parts are polite to talk about, some parts are not. And, just because it is private, does not mean it is shameful.

Remember, If you act embarrassed or ashamed, he WILL pick up on that.

I get the feeling that you really want to be open and honest about this with him. Talking to a psychologist is a very good start to zero in on the wording. Just remember that the psychologist is a person too, and FAR from infallible. I have had some very insensitive therapists who did me more damage than good in dealing with my own issues.

In my opinion (For what it is worth), even if he is too young to understand, you can tell him everything. He will just keep asking questions until he DOES understand. The earlier he knows, the better he will cope.

As a suggestion (again, for what is worth) look to children who suffer from more noticeable challenges like child amputees, and look at how they cope. When they know how they are different, they rise to the challenge. Imagine if their parents covered them in blankets and refused to let the child outside, because, "Their deformity will embarrass the family!" Then at age 10 they were suddenly taken to a doctor's office and told, "Wear this set prosthetic legs, and pretend to be normal."

I do not see this as any different. It is important for your child to know early about the things that make him both different, and special. If you make this an issue he should be embarrassed or ashamed about, then he will be both embarrassed and ashamed. Your concern for his privacy is just that... YOUR concern. He doesn't need to be concerned about it. He only needs to understand it.

Again, all my love and respect to you. I think your son is very lucky to have a mommy like you. That you are even here, and looking for advice on this topic is something my own parents would never have done.

Your boy is very special, and so I think, are you.

Please keep us posted.

Thank you for your insights

I had smaller implants put in place when I was around 9 and was told that larger ones could be implanted later, which would be my choice. I never chose to have the large implants and overall, I have not regretted that decision.

I first learned about my infertility when I was young like 5-6, and my mom was the one who spoke with me about all the issues. My dad never dealt with the issues very well. I agree with the other response that it is "best that I knew early rather than piecing it together ..." My brother has been aware of my situation but we never talked about it. I later discovered that one of my male cousins knew a little about my situation.

I think it is important to share all the possibilities we have in building families, including adoption. After three years of marriage, my wife and I decided to begin the adoption process, and now we have an adopted, nine-year-old daughter. God has been gracious to us. I certainly believe that faith is an important part of this journey.

Have you been in contact with Lorraine Bookless and her support group: http://www.asg4u.org/ ? I have spoken to Lorraine and believe she has a great support group.

God bless you and your son. You can reach me at revmdspeer@hotmail.com

Thank you so much for responding. I will check out that website.

I had my implants at 15, It's actually a matter of when there's enough scrotal tissue to be able to fit the prosthesis, so that it only needs to be done once. So it may to vary from individual to individual. I think it was probably a good age - but it isn't something I dwell on. My regrets lie more in the type of prosthesis, make sure he gets the more lifelike, soft type.

The conversation about impotence happened at the time I was made aware of not having testes, around age 8-9 and it was with my pediatric endocrinologist. There's no way the gravity of it hits you, that comes later. No kid likes to be told they're different though, I remember being quiet and shy during the whole thing. It was best that I knew early rather than piecing it together during a playground discussion or something. Perhaps more conversations about not being able to have kids as I got older would have helped. One things I hated, though, was the 'Oh, you can just adopt'. Not because of the idea, but as it always seemed dismissive of my feelings or that it was all that needed to be said.

I have a sister and she knows but it's never talked about. I often wondered how much she told her school-friends. I would hope she didn't, but teenage anxiety being what it was the thought did cross my mind whenever I'd be giggled at or the like.

I wish you and your son all the best.

Thank you