IamA 40 year old plus male with Kallmann syndrome which means I did not go through puberty. AMA!

I'm afraid that there's nothing there on your blog indicating that you're doing an AMA. Could you post a note that links to this post, so that we know that this really is your blog and not just something you found?

Thanks!

Edit: because the blog has not been updated within a reasonable period of time, this post has been removed. Once OP provides adequate proof, the post can be reapproved.

Edit II: blog updated; post reapproved.

I have just updated the blog now.

why do you have to be so fake? Don't be so fake and stop making alt accounts for karma purposes.

Thanks!

I am not fake. I have updated the blog now.

No way. I just received my blood test that I did because I am 17 and not showing any signs of puberty. Blood test said that my body made very little testosterone. I also can't smell.

.get them to check your LH / FSH levels as well.

17 you should have started by now. Make sure you are sent to see an endocrinologist straight away.

Contact me for more information if you wish.

Do you appear prepubescent, or have hormone treatments caused you to go through puberty artificially?

I had hormone replacement therapy which produces most of the changes seen at puberty such as hair growth, muscle growth, libido, voice breaking. So outwardly I look "normal" if only about 5 years younger than I am.

I have no testicular growth. So the testes are the same size and shape they have been since birth. I have had very little penile growth, but it is just about inside the lower end of the normal range.

The testes will remain small & dormant unless I go onto specialised fertility treatment when they can grow only for as long as the treatment lasts, once you stop treatment the testes will shrink again.

Has it affected your relationships? If so, how?

It has made me very cautious in having any sort of relationship. I have very little self confidence at all due to the lack of development, even though I have a sex drive. I lack the social skills to ask women out and prefer to remain on my own.

I am still a virgin at 43. I had chances when younger, at University but did not see them at the time. Now I keep myself busy with other things. I have got used to the single life I think I will stay like this.

Most men with KS do have physical & emotional relationships but I have not seemed to find the right person yet.

At least you're a wizard.

Wish I was, it would make this a lot more easier to deal with at times.

I had chances when younger [...] but did not see them at the time.

Man, this describes a lot more people than you think.

I know but most people do not have the additional problem of being so underdeveloped they even doubt they can have sex.

I know I can have sex, but it does not stop me being so ashamed and embarrassed about the way I look down there.

Not sure if this is something you would be interested in, but:

/r/RandomActsOfBlowjob

It's a subreddit for sexual favors for people who have had difficulty with their sex life in the past and could use some experience/confidence. Check it out.

Interesting. I might take a look at that later. Thank you.

Do you feel like if you where given the opportunity to start treatment earlier that you wouldn't have deficiencies in your social skillset etc ?

In other words, is it your condition that has caused your lack of social skills, or is that just your personality?

I believe my condition and lack of treatment as a teenager has led directly to my lack of social skills. I do not think I have a bad personality and get on well with my close friends.

I am just not very good in social situations and making new friends.

Do you think we could see a photo of you? (I'll understand if not.)

1 in 50000 seems high to me, are there different levels of Kallman's Syndrome or is it more like a on-off switch for want of a better term.

And, well, do you ever feel as if mentally your less mature/more inclined to childish activity? I guess what I'm asking is do you feel like an adult?

I might be able to sort a photo out but if you Google "Kallmann syndrome" I appear in a lot of photos and videos.

1 in 50,000 is an estimate, the actual number is unknown and is probably underdiagnosed, especially in females.

There are certainly degrees of severity of the condition. Even two brothers will not show the same symptoms. It is certainly not all or nothing condition but shows a broad spectrum of severity.

I feel like an adult certainly, but before treatment I looked over 10 years younger than I was and could not shave so I did have problems at time being taken seriously at work.

How is your singing voice?

Hopeless.

My voice broke around 23-24.

There is a type of singer called "castrato", where they castrated healthy boys to produce a distinctive voice. Thankfully that does not happen any more.

There is a jazz singer called Jimmy Scott who has KS and refuses treatment to keep his voice distinctive.

Most of our sense of taste comes from our sense of smell; does your lack of smell affect your sense of taste as well?

Edited: spelling

Yes, I have sense of taste but I am sure it is totally different to somebody who can smell.

I probably can not detect delicate flavours but I certainly have foods I do and do not like the taste of.

I hate to piggy back, but does Kallmann's cause anosmia (inability to perceive odors)? Or do you have anosmia due to other reasons?

They are directly linked. There is a problem with the development of the brain in the first 10 weeks of life which causes both the anosmia and the puberty failure.

I've never heard of this diagnosis before. Fascinating. Did your genitals develop normaly as if you had puberty, or did that only happen when you got treatment? (I'm not entirely sure how puberty is for men, as I'm not a man). How did you feel when you finally got a diagnosis? Did it take you long to accept it?

No, I had very little genital growth. No testicular growth and very little penile growth which was both embarrassing & annoying at the time.

I was relieved to get the diagnosis. I was able to put a name to the condition and I was not a "late bloomer" as every doctor had told me I was up to that point.

I think I am content with the diagnosis now. I get satisfaction in talking to others with the condition and helping if I can.

And I thought having a baby face was bad! How many times have people told you it'll be great when you're older and still look young? I'd cry.

It is a big issue when you are in the late teens and 20's because that age gap is so obvious and it is difficult sometimes to date in your own age range.

I am over now, so looking 35 is not a problem but looking 15 when you are 20 is a much bigger problem.

So what has the testosterone replaced that puberty normally would have covered? Is your voice deep? Body hair? Muscle mass? And if I may ask, did your penis grow from it?

My voice broke and I developed a bit more body hair. I started shaving and my energy levels and libido increased.

My penis has never really grown since childhood so it is small, but just about at the low end of the normal range.

I have never had any testicular growth.

Is there any knowledge you wish you could have given your younger self?

Absolutely.....

Gaining the correct diagnosis and treatment at 16 or 17 would have made a major difference in my social life.

I stayed away from so many social situations when younger, it became so routine. I would go back and tell myself to be a "normal" teenager and not let my condition hold me back.

Do you have any siblings? Do they also have Kallmann syndrome?

One brother and one sister and no they do not have Kallmann syndrome.

Have you ever had a crush on a girl/boy that is not sexual?

Yes, totally.

I have had sexual and non-sexual crushes with people of both sexes since treatment.

very interesting question. To add, what kind of decisions to you find yourself making thats different to others (since sex probably isnt a factor)?

I think with my level of development it takes courage to have a sexual experience with anybody. You have to love & trust that person.

I know I can have sex but there is a huge potential for embarrassment if it goes wrong.

If I had started sex younger I do not think I would have a problem but the older I get the more difficult it is to start.

Most KS guys have sex, and if they start younger they get over any problems easier. Once they start the drive & excitement takes them on. I have never met the right girl at the right time to have sex.

Don't take it too seriously. Everyone who has sex has some embarrassing situations eventually. Don't let that stop you. They make for funny stories later on.

Thank you. I do hope so.

Does the testosterone you are given allow you to be fit and build muscle? Or is there othwr missing elements?

Yes, the testosterone I take would allow me to fit and build muscle if I wanted to but I am not fit at the moment and a bit overweight.

Some of my fellow KS friends are very fit and looked very toned. You would never suspect they had a medical condition.

How did you cope with the idea of not procreating? That is, if you ever wanted to

I have accepted it, it was never really an issue for me.

There are fertility treatments available and some of my KS friends have had children of their own.

I do not have a strong desire to have kids of my own but might be open to having a relationship with somebody who has got kids already.

There are fertility treatments available and some of my KS friends have had children of their own.

Yeah, I have a friend with KS and she has a kid. Had to go through treatments but it did not take her too long to procreate.

Fertility treatments for women with KS tend to work quicker as they have the immature eggs already in the ovaries.

For men it takes a while for the testicles to develop in order to produce sperm.

Great AMA OP. I see you answering questions candidly all the way down the page, I can tell you are legitimately interested in education and awareness of the condition.

I see you're clean shaven in the pictures I could find, but I saw you shave every week or so with treatments; as a beard-clad man, I'd like to know if your facial hair would grow in if you weren't receiving treatments

Thank you for your reply.

No, I would not get any beard growth with no treatment.

My testosterone level off treatment is barely above zero.

As a young male I would get erect if the wind blew too hard. The mere thought of a naked girl caused all sorts of problems. Did you go through this or was this something that was absent because of your condition?

I had no sex drive at all in my teenage years and did not even masturbate until I was 18. It was almost like I was still waiting for things to happen. This was pre-internet days so porn was not easy to come by. It would be totally different for young KS guys these days.

Now, on treatment I have the same drive and reactions as any other man and get morning erections and everything else you would suspect.

How did it effect you in high school?

High school was fine for me. I was ok academically.

It was obvious that I was "late" but I was not bullied over it. I have heard some bad stories of how some of my fellow patients were treated but my school days were ok.

I did keep myself to myself though and tried to keep out of trouble.

Don't worry mate. You will be fine in the long run!

Thank you.

I am fairly ok with it now. Good and bad days.

I am mainly doing this to highlight the condition to any younger people who might be going through the same. It is not a well known condition and if I can help others get diagnosed & treated it will be worth it.

Created a throwaway to reply to you here. I don't have the exact same condition, but something similar, though slightly rarer. I was born without testicles entirely, so like you, I did not develop but for the use of hormone replacement. Fortunately for me at least, it was obvious since birth, so I began treatment at the proper age for puberty.

Like you, as well, I was always paranoid about how my condition effected relationships. I just want to say, though, that if they care, then fuck em (well, not actually, but you know what I mean), they aren't the ones for you. I've only had 2 girlfriends that have known, and they both have taken it well. I know that's not a perfectly representative sample, but it's all in how you bring it up. I just mean, you can do it!

The worst part for me, though, was worrying about the kid situation. I had heard horror stories of women leaving impotent men, and knowing that it was a 100% impossibility for me to have children, that plagued me constantly. I'm still trying to get over this fear, but it is something that I have been discussing with my current SO.

Thank you for your reply.

I have spoken to guys with KS who have a normal sex life and they say the lack of testicles does get mentioned but is not an issue if you are with the right girl.

I know I can have sex....I just do not have the courage to find the right girl and always make excuses.

My testosterone treatment means I can have erections but being small and having no testicles does bother me, even though it shouldn't. One day I will do it like most guys with KS do.

I am happy at the moment not to have kids, even though it could be a possibility with the right treatment.

Thank you for sharing.

TRT? No MMA fights for you, sir.

Indeed. I would fail any professional drug test going.

Do you...jizz?

Yes, but we tend not produce as much semen as most guys as our testicles are so small.

Do you think this has affected your professional life in any way, and if so, how? Or, to be more direct, what is your job?

I am biomedical scientist working in blood transfusion labs.

I do not think it has affected me directly. The fact I can not smell gets noticed from time to time but it is not an issue.

The fact I am bit of a loner and like my own company occasionally makes people think I am totally anti-social but people soon get used to me I think and I just get on with my job.

Takes balls for this..

It might be because I just had an injection this morning that I am feeling confident enough to post this.

Were you bullied as a kid for being "Different?"

No, I think I was quite lucky at school. Everybody knew I was late but for the most part I was left alone.

One guy made a joke in class about the fact he was twice as big as me already, but he was laughed at for taking so much notice of other guy's dicks.

I think I was fortunate that I was best friends with one of the cool kids in my year group which might have spared me a bit.

What were your feelings towards the opposite (or same) sex going through high school while everybody's hormones were going crazy?

I had no sex drive at all at school. My sex drive only really started at 23 when I was diagnosed and put on correct treatment.

I had no real idea what sex was when I was that age. I knew what it was biologically but I did not have the emotional or physical drive I have now.

I was a bit socially isolated so really did not notice when my peer group started having sex. I was never at those sort parties. It all passed me by, which sounds strange now but that was the way it was then.

Since your diagnosis/treatment started have you balanced that out enough to begin experiencing and feeling desire and urges and things of that nature?

Yes but I think I am too shy to fully commit. I have tried a couple times but ran out of confidence.

Now I tell myself I am content the way that I am and it might happen one day.

Oh wow I'm more curious about that you don't have a sense of smell. Is your taste affected much without a sense of smell?

I do have a sense of taste but it is probably not as refined as most people.

I can taste wine, cheese, coffee, mint and so on but probably can not detect subtle flavours.

Has any of your fellow patients decided not to take any medical treatments?

Yes, I think most of us have gone without treatment at some point.

Some people do not like the sex drive if they are not in a relationship. Some people do not like the mood swings some of the treatments produce. Some people find it hard to get treatment if they do not have insurance.

You can live without testosterone but it does put you at high risk of a couple of conditions and you may not have a good quality of life.

Does this syndrome have effect on aging? Do you age slower?

I do not think so. Now I have normal testosterone levels I look closer to my real age than I did when I was 20.

You say in college you concentrated on academics and sports? Do you mean following sports or playing? I would assume playing with your peers would have been extremely challenging given they were all pubescent and you were not. Essentially a boy playing among men.

No, I was never very sporty but I enjoy sports so I officiated cricket and basketball.

I referee and score basketball matches and umpire and score cricket matches. I am a good scorer in both sports and have officiated at international level at both sports.

I always found it difficult being in the changing room with "men" and made excuses to leave early and shower else where. Slowly I got better and now I am less cautious in being in changing rooms though I will never be totally comfortable.

You mentioned the specialised treatment for growth down below, what does that involve? Like an injection every x days, or a full hospital treatment sort of thing?

Fertility treatment can induce testicular development and sperm production.

Normally it is three injections of hMG or FSH three times a week for upto 2 years.

How do you feel this has affected your youth? (16-20 or around that age)

Yes, I think I did miss out on a lot when that age. I think I was socially isolated which was partly my own fault as I was ashamed at not developing they way everybody else was.

I think I missed out on the emotional development of that age, gaining the experience of talking to girls and asking them out.

I must ask: Is it a reasonable thing to want fertility? Considering the risk of passing your condition to your child, does that weigh on your decision to want fertility?

There is no way of predicting the chances of passing it on. It is by no means certain I would pass it on.

The condition is not life threatening or life shortening.

With prompt diagnosis & condition it is easily managed. A lot of the problems with the condition are down to late diagnosis. If you are know about the condition you can spot the signs and get an early diagnosis.

I quite understand if people say they do not want to take the chance but I do not see it as that serious a condition to have to make that choice, but it will be a personal choice between couples.

How you survived High school or college years?, did you get bullied or sometin?

School was ok, I was not bullied. I was left to my own devices most of the time. Everybody knew I was "late" but nothing bad happened.

College life I concentrated on my academic work and sports and tended to ignore what else was going on. I was good at keeping myself to myself.

If I understand your condition right, would this syndrome left unchecked cause you to be a modern-day counterpart to the castrati of older times? Without the castration of course, just never reaching sexual maturity.

Yes, we would be tall, look young, be infertile and our voice would not break.

Did this affect your height growth as well? I've never heard of this, but I have a younger brother who has been seeing doctors, including an endocrinologist. They haven't pinpointed anything, they just say that "his body thinks he's only 13, but he should start growing soon." He's still around 5' tall, although most men in my family are over 6'. He's 18. How were you diagnosed? Is it a blood test? Would you ever eventually have gone through it, with the condition just making it very delayed, or is it permanent without hormone therapy?

My growth spurt did not occur until I was 20 - 24. With treatment I am now just over 6 foot.

I would not have gone through puberty without treatment.

There is no blood test for Kallmann syndrome directly, it is more a case of ruling out everything else.

Levels of LH and FSH in blood can be measured which would be very low in Kallmann syndrome. A MRI can be done to see if the olfactory bulbs (responsible for sense of smell) are present. If they are missing it could indicate Kallmann syndrome.

It is a permanent condition in most cases. Some form of treatment would be required life long.

Do you have anosmia too? If so, what's it like dealing with that.

Yes, I have anosmia.

I do not think it bothers me too much.

I drink milk that has gone off every so often and often forget I have left the cooker on.

I have lived with it for so long it is normally other people that remind me that I can not smell.

How does this syndrome affect your life expectancy?

No change on life expectancy at all.

Low testosterone would put me at risk of developing osteoporosis or diabetes though.

Couldn't you have become immortal by never technically becoming older than 21?

No, wishful thinking that perhaps.

What happens if you don't take anything/don't seek some sort of treatment?

The patient would be infertile and have poorly defined secondary sexual characteristics. They would feel tired, lethargic and have no sex drive. They would be at high risk of developing osteoporosis and diabetes.

Why would you want to induce fertility and pass this genetic defect to another generation?

Good question and this is a reason why some of my fellow patients will not take fertility treatment.

I do not think the condition is serious enough to warrant that though. With early diagnosis and treatment the condition is manageable and people have a totally normal healthy life.

Problems normally start with the late diagnosis & treatment. If you know what you are looking for you can diagnose it early.

It is recessive there is no guarantee that his offspring would have the disorder. Additionally he most certainly knows the symptoms to watch for, it is unlikely that his children would go without an early diagnosis.

The condition covers all genetic possibilities (recessive, dominant and co-dominant)

Most of us with KS have no idea of the genetic cause of our KS so we have no idea whether we can pass on the KS or not to our children. It can be anything from a 0% chance to a 50% chance.

I think most people with KS would explain to their partners the possibilities of passing it on before deciding whether to have children or not.

Just get a prostitute... What? We were all thinking it...

I have tried that twice....could not go through with it. I was ready to go as it were but my moral objections overcame my sex drive so I left.

No shaving= :)

I did like that at first, but when you want to date you need to shave to look more your own age.

I now need to shave every 5 or 6 days.

How has this mentally affected your life? Has it ruined opportunities for you? What opportunities did it create?

I think I have missed out on opportunities but partly this my own fault as well.

I have had chances in the past but did not have the courage or drive to go through with them.

Now I tell younger guys with KS to make sure they make the most of any opportunities they get and not let KS hold them back.

What is your height / weight?

*Is it closer to that of an adolescent or an adult?

Adult weight and height now I have been on treatment for almost 20 years. I am just over 6 foot and slightly overweight.

How has the late diagnosis affected your relationship with your parents? Is there a genetic component to the condition?

The condition is purely genetic but I think I am the only person so far with the condition.

If I ever did have children there is a chance I can pass it on.

My condition is rarely mentioned in my family.

any pics from when you were an adult but before treatment?

There are on my Facebook which is open for anybody to find.

I am not sure how I can post photos here. I might try to post photos on my blog site if that will help.

Would Kallmann syndrome be revealed by blood test? I am on a testosterone treatment aswell. Just curious because Kallmann syndrome was never mentioned when I was at my doctor.

There is no one blood test for Kallmann syndrome, but if you have very low levels of gonadotropin hormones called LH and FSH it could indicate Kallmann syndrome.

LH and FSH are released from the pituitary gland and act on the testes to produce sperm and testosterone.

It depends if your testes are the normal size. In Kallmann syndrome our testes remain the pre-pubertal size and never grow.

Sorry if the question has already been asked, I havent seen it in my feeds. Is your body able to grow facial hair? Do you still have a baby-face like face. Thank you very much for this AMA!

I can shave now. I shave every 5 to 6 days. I did not start shaving until my mid-20's when I started full dose testosterone treatment.

Does that mean you have a small dick

Small, yes but just inside the normal range for men.

Men with KS show the same variation in size as seen in all men.

maybe you should try those penis enlargement ads on sites like xhamster

No thank you. :-)

It might be small, but it works and I want to keep it that way.

Can we see a picture for proof please? Or is there not much difference in your face?

I will try to post a picture on my blog later. My You Tube videos (plymouthlad38) and Facebook are open for all to see.

Do you have a normal adult height? How tall are you?

Normal adult height - just over 6 foot. My growth spurt came between 20 and 24.

So you weren't diagnosed until 23 but you still went through puberty pre treatments?

I did not go through any puberty pre-treatment.

My growth spurt is controlled by growth hormone.

At 23, I looked about 15, did not shave, had very sparse hair, my voice had not broken and had no testicular growth at all.

Do you have any urges to look at women while they're naked, and anything that "men" who hit puberty react to women in their little minds?

I have a totally normal male sex drive. I look at porn and get the same responses as any other man would.

I do have a strong sex drive but do not have the social confidence to get myself into that situation.

I have tried to pay for it twice but my moral objections got in the way of my drive so could not go through with it.

are you a paedo?

No, of course not.

Get out of here. No proof.

Sorry, but I am real. I have update the blog site. This is not something I would make up.