I read on the Internet that we shouldn't wait two years for the testicles to descend as this could cause my son problems later in life. Our pediatrician referred us to a pediatric surgeon when he was six months old. After an examination the surgeon said to wait until he was one year old and that if the testicles didn't descend on their own he would need surgery to correct the condition. I asked the surgeon if there were any alternative to surgery should the testicles not descend on their own. He responded emphatically no.
shortly after his 1st birthday he was scheduled for surgery, we were actually in the hospital waiting for the surgical room to open when i decided to do a last minute second look for alternatives. low and behold there they were, hormone injections. I found out i could take my son to an endocrinologist and get him a series of injections of the hormone that tells the body to start producing testosterone and thereby causing the testicles to descend. we left the hospital mad as hell at the surgeon for lying to us about the alternatives six months before and then again at our second meeting. our endocrinologist had us run blood tests on our son before he would administer the hormones to establish his testosterone level. that done he had three shots over the course of three months. his testicles did not descend. we then received a phone call from the endocrinologist with the results of his post treatment blood tests. the hormones did not elevate his testosterone levels at all, therefore he has no testicles. I am beside myself with grief for my son. i cannot imagine how he will lead a normal life as a young boy let alone a grown man. I don't want to hear a bunch of c**p about implants or hormone replacement therapy. I want my son to have a normal life. I would gladly give him my testicles if its possible. he has an Identical twin brother with no problems at all. would it be right, if it is at all possible to have his brother donate one of his??? I am lost, confused and scared. I appreciate anyone who has taken the time to read this. I would be eternally grateful to anyone who can give me some helpful advice on what I can do.
We have an excellent urologist that has been keeping us informed of all our options. He says he will never be able to have children. He says that in order to start puberty, he will have to start hormone therapy. And this will be for the rest of his life. But there is some good news. The testicles are not the only hormone producing part of the body. There is the prostate, which is also important. You don't need testicles to have an erection or to have a healthy sex life. (although you do need testosterone, which is where the HRT comes in) Our little boy "knows he's a boy" and his little penis seems to be growing at the right size. I was afraid that once he starts the HRT at puberty, he might have noticeable side effects, like being overly hairy, for example. He assured me that they carefully monitor the dosages and those kinds of things do not happen.
The biggest thing that gets me, is not that he has an empty scrotum. Its the fact that he will never be able to father his own children.
If you try to see the light at the end of the tunnel, you will feel better. It has taken me some time to realize that. He will never know what it's like to have testicles, so it's not like he's going to miss it like you are afraid he might. The doctor said that when he sees him when he hits puberty, he will explain to him the option to have prosthetic testicles put in if he wants to. The doc says more often than not, boys choose not to have them put in. he says that they just don't feel the need to get them because they are used to being with out them. I think we as parents are so concerned about our children, but if we take a "its really not that big of a deal" approach with our kids, then they wont feel that sense of loss that we feel as their parents.
I know it's hard. I wanted more for him. But I see that he's just like every other little boy. The testicles just don't make the man. There's so much more.
Find yourself a great Urologist, as well as an Endocrinologist for when he hits puberty. Those folks have seen this before and they feel our pain as parents. But, at the same time, they've also seen many little boys grow up into teenagers and then men and live happy healthy lives.
Hell,My name is Nara.I'm from Mongolia.I have problem same as you.My son is 2 years old and have no testicles.In Mongolia , hasn't developing endocrinology in medical field. ***this post is edited by moderator *** *** private e-mails not allowed*** Please read our Terms of Use
Hello, I just had my son 3 weeks ago. I am 28 years old and he is my only child, and he only has his right testicle. The other side is just an empty sac that hangs to the side. I tried to be so good my whole life- I went to school, got good grades, did not smoke, did not drink, got a teaching degree and work with kids with special needs- I tried to be so good during my pregnancy- I got married first, took my prenatals, did not smoke, did not drink, ate walnuts and low mercury fish and all the stuff they say to, didn't gain too much weight, took the diabetes test and didn't have prenatal diabetes- i just tried to be and live healthy - - - or so I thought.
And my son was born with a birth defect.
His father is such a manly-man. :-( He blames me for what happened to our son. He thinks it's because I used cocoa butter when I was pregnant to try to avoid stretch marks. Maybe it was. They put chemicals and sh*t in everything.
Maybe it was something I was exposed to earlier, like pesticides a year before my baby was conceived when they sprayed our apartment- maybe that junk is in my womb and I felt fine, but maybe my womb is a toxic waste dump.
Trying to stay positive for my son, but I feel like a failure as a mother. All I have wanted was a child/children since I was 20, it took me 8 years to find a situation where I had a husband and an apartment and a flexible job and everything I thought I needed for my child to have EVERYTHING
and now I feel like a miserable failure my body could not help him grow a perfect body. I will never want to teach him to ride a bike. All the tough-guy stuff his dad does like jumping out of planes and stuff completely terrifies me now, and my husband is distant and aloof sometimes
we are trying to work through it. but my heart it broken. I am scared to have another baby. maybe the pesticides and plastics i was exposed to when we had a bad year with bugs in this shitty aparment a year and a half before he was conceived is still SITTING in my womb like agent orange forever, and I don't even know if there'd be a way to clean it out for a future child... I thought I was fine
I never meant my baby any harm. I wanted him to be perfect and have everything. Looking for a friend and some understanding <3
Sincerely,
Sad Mom
Hello, about a year ago I had one of my testicles removed because of cancer, but I decided that I want it back. I found a group on Facebook called Anorchia for people born with this condition (born without the testicles). We are trying there to solve this problem together. The solution could be the regenerative medicine. Dr. Anthony Atala, who is a pioneer in this field is working also on lab grown testicles (he is an urologist). So, maybe in few years or rather decade or two, he probably would be able to do that. Don't worry so much. You can also find support at Anorchidism Support Group at www dot asg4u dot org.
I'm going to give you some medical facts, but if they can be done is a different situation. Because they are identical twins (not paternal like me), they share the same genetic coding. In theory, a transplant between the two should have a very high chance of success. However, I can't say if a doctor can or can't do this. It will depend upon many factors and there are risks. 1. There should be no chance of rejection, though the donated testicle could still be absorbed into the body instead of being taken. 2. The scrotum is a rich source of blood and is dark and warm. Infections love this area, so any surgery or injury down there has a high chance of infection. The surgery could actually cause each of them to loose their scrotum and anything inside them, worse case. 3. Even if the transplant happens and is possible, any tampering with the cords down there can cause sperm to not be released. He might be making it, but if the path is blocked, it can't get out. It's like resorting a vasdeference that has been cut as a birth control measure. It can be fixed, but might not work anymore for sperm delivery. 4. Depending upon how much the twin without tesitcals are missing, he might not even have a vasdeference (if you didn't know the tube that leads from the testicles to the prostate and eventually out the body). If he is missing this, or more, it might not be possible. Though the transplant might still make him produce natural testoterone. 5. I'm a twin, so I know how it is like. If my brother needed anything, I'd gladly give. Even a testicle if it is possible, I wouldn't worry about that between the two, as I'm sure it's what they would want. But, you can also always wait till they are older and have them make this choice. But talk to a doctor. Have an ultra-sound done. He might still have testicles hiding up there... Hormone treatment for undecended testicles is... unreliable. And having tests to see if the treatment cause testosterone in his blood seems... odd. They should have been INJECTING testosterone into him... not testing to see if he's even making any. At his age? ... 6. Twins have been known to have body parts exchanged, like kidneys and sometimes even arms. A testicle should be able to be moved over. Can't say it would work for sure, but talk to a doctor. Get second opinions. 7. To the people saying you are being selfish, no. Your not. You want what is best for your kid. Having kids is part of that. A transplant can be done at any time, so there is no rush. If the testicles are up there still though, your on a timer. Whoever said you have two years is crazy. A testicle exposed to too much heat can go "bad" within months. I would have been having that looking into right away, with ultrasounds and other detection. If there are testicles up there, I want to know. If they are obstructed up there (they develop inside the body like overies really, and then travel down the abdomen to land in the scrotum, After they decend, the path they fell down on closes up. If this path closed up before they moved... it should be looked into) then he will need surgery. It never hurts to get a second opinion. Talk to specialists. If they can transplant a human penis from one dead body to another living on, and take a leg and reattach it so the ankle is on the knee... can make a hand attacked to the other arm... I'm sure a testicular transplant should be possible. But first, get a second opinion on your son's "testicle-less" condition. Have someone physically check to see if they are there. And if all else fails, talk to the twins when they are young teens and present options for them. By then, they should definitely be able to, as well as possibly be able to create new testicles for him. It's in the works. I hope this is helpful, and I don't claim to be a doctor. But I do have a head for medical facts and have a lot of knowledge about medical procedures. It SHOULD be possible, but there would be no grantee. It really would depend upon how much is missing, and how much the other twin can give. Each can live and reproduce with only one testicle and live a normal healthy life. Without hormone treatment then.
unfortunately i cannot give you any advice but i have been in a similar situation. My son now 7 was born with an undesended testicle i was too told that it should drop in time. between the age of 10months and 3yrs i visited the doctor with concerns as his testicle had not dropped. i then changed my doctor who referred him. He went on to have a camera inserted into his belly button to try and locate the testi but as treatment had been delayed his testi had died leaving him with only one. He went onto have the remnants removed. A scan on the remaining testicle showed he had calcifications (shadows) to which they have no idea what this could be, so every year he has to have scans to make sure they are not growing. It scares the hell out of me that he may not be able to lead a normal life as a man and scares me more that he may end up losing both and not being able to have children. My heart goes out to your son and you and your partner. I hope you can find a solution.
please dont be down on yourself, this is not your fault, it is more common then you think. I also think that its a very selfish thing your partner done blaming you. My partner has been very supportive in our situation. This post has made me very sad knowing that your hurting cause of something out of your control. Please see it as something that was out of your control and be strong for your son. ITS NOT YOUR FAULT :)
Dear sad mom, I can understand your pain very well but just wanted to help you come through this dark valley. First of all: your son's condition has nothing to do with what you did whatsoever. He is meant to be this way and it is good the way he is. But let me tell you my story: I have five healthy wonderful children and when I was pregnant with my first son, I was like you, I wanted to do everything right, I ate well, although in hindsight too little, I went to all the exams etc. etc. What happened was that I put myself in an awful lot of stress with this and my son was very underweight when he was born on time. In the aftermath he nearly died. I cried a lot during this time and blamed myself but came to realize that this would not help my little boy. I had to be strong for him. So, although they told me that I could not breastfeed him as he was so weak, I took him out of hospital after 12 days and started breastfeeding him for 5 months. We loved it and he developed into a healthy young man who is 23 by now. I sometimes think, had I given in into depression at that time he would not be such a lovable man today. My fourth child, also a son, had a testicle torsion on the left side when he was 16. He was in school when it happened, and as he was too ashamed to tell the nurse, he only said he had a stomach ache. Long story short, his testicle died and had to be removed, the other one was sown in to prevent further torsions. Although this was a big shock for us, I do not want to inhibit my son by my worries. The doctor told us that the right testicle will take over the hormone production and he will not have any ill effects. He might have slightly lower testosterone levels, but will be able to have children without problems. The slightly lower testosterone level might also give him a much longer life as testosterone shortens one's lifespan. After a year, my son rejected to have an artificial testicle implanted as this might damage the other one. He seems to be fine now, although he has to take better care of his remaining testicle for example in sports. But he doesn't wear a special guard for that. The doctor said good underwear will do the trick . Also 10 percent of all men have only one functioning testicle! Your son is not so very different after all. Please cheer up a bit for your and your son's sake. There will be many challenges ahead of you and you will need all your strength. Do it for yourself and your child. Do not look back, look at what's ahead of you. Forget everything critical your hubby says about your son. Tell him your son needs a father and if he is a real man he will accept him the way he is, a lovely young boy now, and a normal young man in the future.
I read your concern and all here with interest. I'm a 66 year old male who was born with a similar condition and has lived with it since then....1947. There was no support back then. You and all the others on here are doing the right thing. Following the right processes. Unfortunately I went through a lot of bad time in my teenage years because my parents didn't follow up with my doctor or urologists until I was 20. I have lived on HRT since that time. No problems. Was married for 40 years when my wife died. Had a great sex life. Normal erections and ejaculations. Better from my wifes perspective because she didn't need to take any birth control pills. We adopted a wonderful infant son. And no one but my wife was/is any the wiser of my condition. Just remember to keep on top of it. Get implants and continue with HRT as needed. All of this will go a long way for the mental wellness in your son and you. take care