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I Have Anorchia

A Anorchia anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Anorchia. You're not alone. 75 People

    Our 2 Month Old Baby Diagnosed With Congenital Anorchia

       The very first thing that i wanted  to say on this post has required a lot of thinking and soul searching on my part.But my heart goes out to the brave people who live with this condition in there lives.I have read all the comments,good and badalike and your pain and...
    tstok1516 tstok1516 51-55 1 Response Nov 26, 2011

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    My Son Has Congenital Anorchia

    When my Son was born he had to stay in the Hospital for 5 days because there was still amniotic fluid in his lungs (common). On day 3 they Dr sat us down to discuss the issue with his genitals. We were shocked, this was our first boy and we hadn't noticed anything wrong with his...
    MrsLifeG33k MrsLifeG33k 26-30, F 6 Responses Jan 5, 2013

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    Our Story And A Question About Genetics

    Hello Everyone: I thought I'd share our beautiful baby boy's story. My son was born with a normal sized penis for a newborn. At birth, the pediatrician and a resident evaluated him wrote in their notes that he had normal testes. Everything again seemed normal at his 1-month...
    adastra1111 adastra1111 31-35, F 2 Responses Aug 1, 2013

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    A Friend's 2 Month Old Just Diagnosed With Anorchia....

    Hello, everyone. My friend's 2 month old has just been diagnosed with bilateral anorchia. She's spent the past few days at a number of doctors while I've been searching the web for some comprehensive information... without much luck. The condition is a difficult one but the lack...
    laleresearch laleresearch 36-40 13 Responses Nov 8, 2010

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    Hey You're Not Alone...

    I have it too. Congenital anorchia. Wow, I thought I would be the only person who had this problem within this span of time in this country! Its amazing to know Im not the only one. I empathize with all you other guys about the issues that accompany this burden. I think if...
    Medic8or Medic8or 22-25 11 Responses Apr 12, 2010

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    With Prosthetic Testicles.

      I'm new here and do not know where to start. I feel with my affliction very strange if I was not part of the world. Nieby everything ok, but the bad taste remains. How do you do you deal. Too late I think I realized until the age of 18 years and the first shot at the age...
    dawid123 dawid123 22-25, M 4 Responses Mar 16, 2012

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    Hey Guys,

    Hey all, Yea, thanks for the replies, really interested to know your opinions. Good call Red, using ECM in tissue is finding many uses, I'll have to look in to that. Also I'm applying to med schools now, please wish me luck and if you guys have any advice on applying...
    Medic8or Medic8or 22-25 Aug 21, 2010

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    Here I Am

    I always wanted to be a mom, and finally I was blessed with a beautiful, beautiful boy. Unfortunately two days after delivery, I got the news no mother wants to hear. My son had undescended testes. After several lab tests we found out that most likely, his testes have vanished or...
    HopeTrs HopeTrs 36-40, F 14 Responses Feb 21, 2011

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    Update: I don't know how many members here are

    also members on the FB group, but here are some things you should know about your HRT. If you are not on it, GET ON IT! The negative feelings, moodiness, lack of confidence, impotence, anger, all of those things will ease up once you get to therapeutic levels. My current dose...
    bigredrassler bigredrassler 22-25 1 Response Feb 25

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    I Dont Know How To Put It.

    Hi I am 22 year old male. I was born like this... just like the rest of the ones with this odd condition. I found this site, sometime ago, when I was googling for information. And just reading these stories had me in tears. Its 1:30 in the night, I cant sleep, been thinking of...
    Olelol91 Olelol91 18-21, M 4 Responses Oct 2, 2013

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    Hope

    It is late as I write this. There are days that go by when I don't even think about this. We go about our lives of school, karate, chess club etc. And everything is perfect! And other days it keeps me up with sadness and worry. Confusion and anger. On those nights I revisit this...
    meja311 meja311 31-35 1 Response Feb 5, 2012

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    My Son Has Anorchia

    Wow have just read some of your stories. I only found out on July 6 th 2011 that my 7 year son has Anorchia after years since he was 3 I have been pushing for doctors to check him out more since his younger brother was born as the difference was obvious. He was supposed to...
    turtond turtond 41-45 2 Responses Jul 7, 2011

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    Depression

    I don't really want to say an awful lot in case anyone anywhere recognises me from this post, so it might seem terse and disjointed and a small bit odd. I also realise that it doesn't make a huge amount of sense to be worried about privacy when posting something so personal on a...
    easpa easpa 18-21, M 6 Responses Sep 10, 2011

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    The Technology To End The Testosterone Replacement Therapy

    http://www.ncbi.nlm.nih.gov/pubmed/12960073
    HopeTrs HopeTrs 36-40, F 1 Response Nov 16, 2012

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    Identical Twins With Anorchia

    I am so happy to have this group out there. I have not searched "anorchia" in years and just did so and found all of you. I have identical twin 6 year olds with this condition. My husband and I have acted very normal about it since we found out when they were 4 months old...
    supportivemotheroftwins supportivemotheroftwins 46-50, F 4 Responses Aug 16, 2011

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    Really Living Out Loud!

    I have had some positive feedback on my decision to be public with my anorchia.  Lots of support from friends and family.  I have also discovered that there is a huge lack of awareness on the subject.  So, coco from this group and I are working jointly to increase public...
    bigredrassler bigredrassler 22-25 5 Responses May 13, 2011

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    A Visit With A Pyschiatrist

    My son has Anorchia, he is 1 year old at this point. { I have another story about how we found out about his condition, posted as well.} I recently got to talk to a Psychiatrist connected with the hospital and clinic through which all his appointments and hormone treatments, and...
    MrsLifeG33k MrsLifeG33k 26-30, F 2 Responses May 16, 2013

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    To All Moms Of Kids With Anorchia and My Dear Mom

    Happy Mothers Day. Whatever happened to us is not your fault :) Let us take life for what it is and live a happy life. God BLESS all of us. Love you all...
    healthiswealth healthiswealth 36-40, M 1 Response May 12, 2013

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    An HRT Question

    Hello guys, long time since I viewed the forum, glad to see new ppl and new posts :) Anyways I had a question, its based a bit on myself actually. So b/c of my anorchia and the HRT I take, I have some gynecomastia. I was wondering if anyone is in the same boat regarding having...
    Medic8or Medic8or 22-25 4 Responses Apr 15, 2013

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    9 Year Old Son With Congenital Anorchia

    Hi there My son turns nine this month and we are assuming will start having to have testosterone injections soon. We've known he was anorchic since he was one, and I've talked to him here and there over the years to try to make it just normal - I never wanted to have to deliver...
    anothermum anothermum 36-40, F 1 Response Jun 12, 2013

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    This is the only secret I keep.

    I am 20 years old. I have anorchia. Nobody knows except for my parents, brother, and girlfriend. My closest friends don't even know. I guess its best that way. What makes me different from the rest of you I suppose is that I am an identical twin. I was born like this, but...
    buckhunter5253 buckhunter5253 18-21, M 3 Responses Dec 26, 2013

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    Some Hope For The Future.

    I write this to share the hope that I have.  ACell Inc., a company founded by Dr. Stievek(sp?) is a regenerative medicine pioneer.  Using the extracellular matrix derived from pig bladders, they have been able to regrow lost fingers, and experimentation is...
    bigredrassler bigredrassler 22-25 11 Responses Oct 19, 2009

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    This is the first time seeing a blog-type

    program that welcomes this topic of discussion. After reading a few of the experience posts, I thought I'd also enjoy posting mine. I was 12 when I was diagnosed with anorchia. My mother sat at the foot of my bed (the only time in my life when she has performed this action) and...
    WhosThatTallGuy WhosThatTallGuy 18-21, M 6 Responses Mar 27

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    I Have Few Questions

    Dear all, my son (4 years) has anorchia too. I read your stories and they are really helpful. Of course it was really hard for me and my husband but now we are quite OK and happy again. We are here for our son and we will be here when his questions start. I know a lot about...
    ahamom ahamom 31-35, F 4 Responses Aug 10, 2013

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    My Anorchia

    I am a 24 year old who has lived with Anorchia throughout my life. Ever since the age of 11 I have been having 'treatment'. I say 'treatment' because when I look back at it, it's not that bad. Obviously I've had this my entire life, but 11 was the age of discovery for me. I'm...
    KalEll KalEll 22-25, M 7 Responses May 16, 2011

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    Feel Alone?

    Yea, me too. I am 35 and have congenital anorchia. I was treated at USF Medical Center in my youth, then off to various local clinics through a wide gammut of doctors, none who really seemed to "get it"... I've always felt alone, and have always wanted to talk to...
    ImLikeYou ImLikeYou 31-35, M 4 Responses Dec 21, 2009

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    I am so glad that I found this group.

    My son is now 12 years old and was diagnosed with vanishing testes syndrome around 1 to 2 months old. We were in the same boat as alot of you in the hospital they told us that he was to small to circumsize and that one of his testes had'nt descended yet. After the fact and going...
    Ansel08 Ansel08 31-35, F 1 Response Feb 26

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    Neverloosehope

    Finally i found a place...hello everyone i also have anorchia. i m 30 yrs old... as many of you have described, i came to know about it very late...my parents never told me abt it. I start my story from where I came to know about it. I was 13 yrs old regularly school going below...
    neverloosehope neverloosehope 31-35 1 Response Jun 9, 2013

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    Hi everyone, folks of my time (lol)!

    I'm here to share my story and to ask a question, too. I'll start from dinosaurs (from when I was born). I was born in 1997 in Italy -so I apologise if I'll do some grammar mistakes-. Anyway, as you can guess if your good at Maths I'm currently more or less 17 years old. My...
    Jokel Jokel 16-17, M 1 Response Mar 1

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    Mother Of 5 Year Old With Congenital Anorchia

    Hello. First of all I am so happy to have found a group of people that can relate to this disorder and what we have experienced thus far. We have felt entirely alone since my son was diagnosed and it is wonderful to get to read all of your stories. My son was born with...
    tgmom tgmom 31-35, F 5 Responses Aug 15, 2012

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    Feeling Low..

    Its weird how I never really was depressed about having this condition until a year or two ago. I thought people are supposed to become more resilient as they age, proverbs such as "time heals all wounds," etc, would also suggest as such. But for me things are different, I am 25...
    Medic8or Medic8or 22-25 1 Response Jan 13, 2012

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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...
    bigredrassler bigredrassler 22-25 9 Responses Aug 5, 2009

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    I Am The Very Scared Mom...

    I write this with tears in my eyes. I am the mom of the most amazing 7 yr. old little boy. He's smart and funny and I wouldn't trade a single hair from his head to change him! He was born with bilateral vanished testis. My husband and I found out about 2 yrs. ago and almost...
    meja311 meja311 31-35 13 Responses Sep 6, 2010

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    Check Out This Article!

    Tissue engineered testicular prostheses with prolonged testosterone release. http://www.ncbi.nlm.nih.gov/pubmed/18536882
    Medic8or Medic8or 22-25 2 Responses Mar 27, 2012

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    Late Diagnosis Anorchid Seek Same...

    Well hell... I was hoping to find someone on here with a story close to mine but no-one seems to have been diagnosed ``late``. Already through high school (which SUCKED!!) and into my second year of university. I was working the till at a summer job when this little brat...
    badger4077 badger4077 31-35, M 8 Responses Feb 10, 2012

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    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...
    MrsLifeG33k MrsLifeG33k 26-30, F 7 Responses Jan 19, 2013

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    Congenital Anorchia: My Son's Story...

    My son was born with congenital anorchia. I was 1st told that he had undecended testicles and they would come down on their own. After a few months, I went to another pediatrician for a 2nd opinion. I was then sent to a pediatric endocrinologist. I am very blessed to have such a...
    supportformyson supportformyson 31-35 11 Responses May 14, 2011

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    Nice To Finally Put A Name To The Condition!

    So, I'm 29 and despite having anorchia all my life I've never had a name for it. I've always assumed the condition was so rare that there wasn't one! I've really struggled with this and it's been a source of great pain and even shame for me. Like so many here, the doctors...
    Seeker242 Seeker242 26-30 4 Responses May 24, 2011

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    Living Out Loud

    I have lived with my condition in silence and shame for too long.  I don't want it to be a secret any more.  The stigma associated with this condition is probably all in my head.  So I have told my friends and those that I know that I have anorchia(and explained what it is in...
    bigredrassler bigredrassler 22-25 2 Responses May 11, 2011

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    Related Experiences

    Not a lot of people seem to have heard about BDD. I've even had a few psychiatrists and therapists who had not heard of it. To quickly explain it before I really talk about how it...
    SailingwithSparrows SailingwithSparrows 22-25, F 1 Response 7 hrs ago

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    September 2010: Sometime this month, without knowledge, I conceived my second child. I was living in Dodge City, KS with my ex fiancé and his son. We were constantly fighting and...
    Krissysheart Krissysheart 22-25, F 2 Responses 15 hrs ago

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    It all started when I got really bad pains in my joints every day it was a new pain somewhere else. To be honest everyone thought I was crazy I knew something was wrong. So a few...
    HannahdawnK HannahdawnK 18-21, F 1 Response 13 hrs ago

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    I don't quite know where to begin. I am feeling that there is absolutely no point in being so close to anybody anymore. It just hurts too much when they are gone. I have lost...
    SteelPearl SteelPearl 46-50, F 1 Response 12 hrs ago

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    Me too., i have terrible memories of school .. I feel i missed a lot of my education dealing with bullies n meanies that i couldnt comcentrate on my studied. I was made to feel...
    Janeysunshine Janeysunshine 36-40, F 2 Responses 7 hrs ago

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    Well my boyfriend does! He falls asleep most nights we are together on the couch and I come and 'collect' him when I wake up at crazy o'clock and he isn't there. I have asked him...
    Starz3060 Starz3060 26-30, F 2 Responses 2 hrs ago

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    I have worked hard in school for my entire life. I have never gotten anything below straight A's and take all honor classes available. I have never done anything bad such as...
    brokeninsidesmilingoutside brokeninsidesmilingoutside 13-15, F 1 hr ago

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    For guys. I just saw that spreadsheet a guy made for all the "excuses" a guy's wife had for not having sex. And it made me think of stuff like how my friend's boyfriend wanted them...
    PinkMellow PinkMellow 18-21, F 24 mins ago

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    I am Lisa new here. I don't know how to describe myself. I am a sentimental but optimistic girl. I feel so lone and helpless when I was told that I had affected with herpes.I have...
    herpesltr herpesltr 31-35 1 Response 15 hrs ago

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    Welp so it looks like I'm the first post here. *takes a deep breath* okay, so my mom who is now 37 years old is a drug addict, more specifically meth, speed, heroine and whatever...
    Cryingsmile Cryingsmile 16-17, T 2 Responses 13 hrs ago

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    After 21 years of marriage, my wife wanted me to take another woman out to dinner and a movie. She said, “I love you, but I know this other woman loves you and would love to...
    sapphire601 sapphire601 31-35, F 11 hrs ago

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    I don't enjoy the career path I chose. I'm not that good at it either. I'm 32 and have no clue what to do with myself. 3 years ago I started college. My plan was to get an...
    Roxvox Roxvox 31-35, F 2 Responses 4 hrs ago

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    I havent been diagnosed yet but Im pretty sure I have it. Doctors say I have disorder. It sucks. I started feeling this way almost at the end of my first year in college. I had a...
    flight12 flight12 18-21, M 3 Responses