A difficult truth to face ~ Living with Kallmanns Syndrome

 Growing up was tough. I was always different, even as a kid. My brothers were into sports and they, most of the time, seemed like they weren’t afraid of anything. I was quiet and careful, they were loud and reckless. Even my sister seemed like more of one of the boys than I did.

I was always the good kid. I got dozens upon dozens of behavior awards in primary school. Some kids picked on me because I was a ‘goody two shoes’ and was more often than not praised by my teachers for being well behaved and always doing my work. Little did I know then that being a goody goody was the least of my problems.

Not long after I was 13 my parents had split up. I was living with my dad and his partner for a while. It was a depressing time for me because I used to get made fun of a lot. I wasn’t a cool kid, or a good looking kid, or overly smart. I was just a geek. Plain and simple. I sometimes got pushed around, but it was mostly name calling. What didn’t help was that since I was young I was always a little over emotional. So for a while I was known as the ‘Cry Baby’. I didn’t have a lot of friends either.

So despite all this emotional torment, and school work, and family problems going on, I had just one thing on my mind. Puberty. Changes that a young man or woman go through that leads them into adulthood. Physical changes that a makes a child turn into an adult. With a few bumps along the way.

Apparently that wasn’t the plan in store for me yet. So I keep going on, working hard at school, trying my best, dealing with more family issues and all. I changed schools a bit, moving away and such, so no one seemed to notice there was something wrong with me. Heck, I didnt even really know. I figured I was a late bloomer. My dad didnt fully develop til he was around 18 as I had been told. So I didnt stress too much.

The first time I was concerned with late puberty was when I was in the ninth grade. A guy I know was talking about shaving before school, and a few of my friends were around, joining in on the discussion. I had nothing to say on the matter, so I kept quiet, kept my head down and didnt want to draw attention to myself. It felt horrible, being excluded from the group, even though it was nobodies fault.

I felt a little out of touch around that time too, because all I kept hearing about was how everyone was having sex. I wanted to, but my low sex drive and small penis would not have helped. Especially since most people that age would laugh at someone with  such a small penis.

Eventually I left school, and started working. Besides the two girlfriends Id had physically in my life, I mostly had online relationships with many girls. They never really lasted, but I still felt something for them. Not enough to tell them about the issues I had.

At the age of 19, my on-again-off-again girlfriend and I were talking, and I disclosed to her my deep dark secret.. That I had not gone through puberty and was embarrassed to tell her. I called it my 'issue' and I kept saying that I couldnt do anything with her because of my 'issue'. After heated discussion and a challenge from her, we tried. It was difficult of course, but it happened. Not like you would expect anyway. We experimented in many ways, but I was still largely embarrassed by it all.

So for a while I had lived through this problem, telling myself "It will happen next birthday...It will happen by Christmas...It will happen next birthday". Every birthday and Christmas I woke up expecting to have a beard a, a whole heap of body hair, and at least a 6 inch penis. But it never did happen.

So after my last birthday - my 22nd birthday - and I was with the girl of my dreams for almost 2 months, who knows of my 'issues', I decided it was time to finally see a doctor. I went and saw the local GP, who I explained what was wrong to, and she seemed very understanding. She made me get undressed as she examined my body, as I stood there embarrassed. She lay me down on the bed and checked my testes size and my penis size. She sent me for two sets of blood tests. One was a regular test - blood count, liver function,  basic stuff. The other was called the Karyotyping test. I wasnt quite sure what it meant but I had a look on google for something written on the referral letter called "Klin.efelters".

Klinefelters is in males, and is XXY chromosomes, which leads to low testosterone and female characteristics. Lets just say, I was having a bit of a panic. After a few weeks of waiting I finally got the first test results back - everything in my body was normal, except for a testosterone count of 1.1 when it should be around 12-35. I was pretty excited that chances were it wasnt going to be Klinefelters.

She referred me to an Endocrinologist, and on the initial consultation of getting me undressed and checking my penis and testes size, he ruled out Klinefelters and introduced me to something called Kallmanns Syndrome. After a few visits he checked my sense of smell, and we realised that I can only smell through one nostril.

Kallmanns Syndrome is a decreased functioning of the glands that produce sex hormones which is also known as hypogonadism. Its a form of secondary hypogonadism, reflecting that the primary cause of the defect in sex-hormone production lies within the pituitary and hypothalamus rather than a physical defect of the testes or ovaries.

It is treatable with HRT (Hormone Replacement Therapy), which I have recently started. At the moment I have not noticed any changes but I am trying to stay positive.