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. 88 People

    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
    3 Responses Dec 21, 2009

    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
    12 Responses May 14, 2011

    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
    18-21, M
    1 Response Mar 1, 2014

    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
    36-40, F
    4 Responses Aug 10, 2013

    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
    36-40, F
    2 Responses Aug 1, 2013

    The Technology To End The Testosterone Replacement Therapy

    HopeTrs HopeTrs
    36-40, F
    1 Response Nov 16, 2012

    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
    1 Response Jul 7, 2011

    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
    12 Responses Nov 8, 2010

    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

    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
    6 Responses May 16, 2011

    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
    10 Responses Oct 19, 2009

    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
    5 Responses May 13, 2011

    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
    1 Response Nov 26, 2011

    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

    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
    7 Responses Feb 10, 2012

    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

    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
    8 Responses Aug 5, 2009

    Ok here it is. I also have Anorchia.

    I was born in 1975 to a single mother. At about 3 or 4 years of age I had exploratory surgery but the surgeon only found a small nub of one Testical. Growing up I was never started on treatments because my mother was in denial about the condition and just preferred to not think...
    deleted deleted
    2 Responses Dec 31, 2014

    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
    12 Responses Sep 6, 2010

    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

    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
    36-40, F
    1 Response Feb 26, 2014

    It is so amazing to find this in group,

    i never really searched anything about it, lucky for me, my father was a doctor so we caught this very early and i have been on HRT for last 9 years. Im doing amazingly well on injections, im 22 and i get 2ml every one month.I dont feel any mood changes or lethargy even if i get...
    neo1992 neo1992
    22-25, M
    2 Responses Aug 7, 2014

    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
    3 Responses May 16, 2013

    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

    Hey everyone! I have created a private

    subreddit simply titled "anorchia" with the tagline "A support subreddit for guys with anorchia and parents of boys with anorchia (congential bilateral absence of testicles) " I am the mod of the subreddit and simply message me to get in! I hope we can create a safe space for...
    xyatest xyatest
    31-35, M
    Apr 13, 2016

    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
    5 Responses May 24, 2011

    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
    22-25, M
    3 Responses Dec 26, 2013

    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


    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
    1 Response Jun 9, 2013


    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
    4 Responses Sep 10, 2011

    So, it's taken me several years to build up the

    courage to even think about this story. My only wish is to purge myself and to hopefully inspire, inform, and encourage guys like me to learn to except this burden as you would except anything other aspect of your life. And as I said, I've felt trapped, and sorrowful just for...
    JamesMcC93 JamesMcC93
    22-25, M
    4 Responses Nov 6, 2014

    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
    2 Responses May 11, 2011

    Hi guys it was a wonderful forum

    for us to keep in touch! But it's not gonna be around so please keep in touch with me, I would really appreciate that! shaunak.narayan@gmail.com
    fakeintrovert3 fakeintrovert3
    26-30, M
    2 Responses Mar 23, 2016

    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
    1 Response Feb 25, 2014

    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
    13 Responses Feb 21, 2011


    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
    1 Response Feb 5, 2012

    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
    22-25, M
    7 Responses Mar 27, 2014

    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
    3 Responses Mar 16, 2012

    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
    Mummykiwi Mummykiwi
    31-35, F
    4 Responses Aug 11, 2015
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