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Kallmann Syndrome, Self Image & Sex

February 10, 2011

Kallmann Syndrome, Self Image and Sex.

This is going to be a very personal blog entry and by its very nature it will be explicit in content in places.

I have spoken to a lot of people and met a lot of people with Kallmann syndrome (KS) and Hypogonadotrophic Hypogonadism and over time I have had some rather frank discussions.

To start with a little about me; as a 41 year old I am very sexually inexperienced, my total sexual experience amount to one failed sexual experience at the age of 37 and an occasional but not very fulfilling gay encounter (not full sex). Most people I talk to with KS are more sexually experienced than me but at the moment I can only speak from my own experience.

Looking back at certain situations certainly at University there were times when sex could have been available, but not being on treatment at the time I neither had the knowledge or the drive to take up the opportunity. I had no sex drive while as a teenage and had little interest or drive, I was just waiting for things to develop. I was 18 the first time I saw porn and had little knowledge of the small pieces of conversation I heard other boys having.

As with a lot (but not all) men with Kallmann syndrome I have underdeveloped genitals. With an erect length of a little over 4 inches it puts me in lower end of the range for “normal” men. As with some men with KS it is the lack of testicle size that is more of an issue for me than penis size. Not all men with KS are at the lower end size wise, some will consider themselves well in the “normal” range. I can just about live with being small; it is the lack of testicle size that is more annoying most of the time. Even though they play no part in penetrative sex, it does a lot to a man’s self image not to have a proper set of testicles.

Starting treatment early, preferably before the age of 17, appears to have a big impact on the final penis size. The earlier treatment is started the more likely it is for the penis to grow to whatever length it is pre-determined to get to.
I think in general men with KS have less sexual partners than other men and taking the first step is often taken with more trepidation than it is with every other man at some stage in their life. Most of the men I have spoken too were extremely nervous on the first attempt, but once sex drive overtakes inhibitions the outcome is well worth it.

Most men with KS will have normal sexual function with erections & ejaculation, but for some men the volume of ejaculate will be lower than some due to the underdevelopment of the testes and prostate gland. There will be a small percentage of men with KS with very under-developed penises (erect length of less than 1 inch) for whom penetrative sex would be very difficult.

In my many conversations with men with KS it is fair to say no one person is the same. I think all men with KS do have an issue with their self image and their sex lives at some stage. Most overcome it and end up in stable relationships with their partners. Finding the right partner is the key. Being in a stable relationship with an active sex life makes coping with Kallmann syndrome far easier for a lot of people I talk to.

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4 Comments
  1. Sam permalink

    Thanks for posting such an honest account. I’ve had similar issues and very bad experiences when members of my peer group have found out. I cannot really say anything very positive about having Kallmann Syndrome although, now I am in my forties, it has little impact on my day-to-day life and I am much happier with my self-image and life choices. It is an isolating condition but I also believe that my own personal situation when I was younger exacerbated the problems that I have had coming to terms with the condition. I hope anyone being diagnosed today is given some support by the medical profession to deal with the psychological and social impact that it can have. My main issues growing up with the condition were of penis size and testicle size, not fertility which seems to be what people without the condition fixate on. I wish my doctors had been honest with me about the expectations of treatment when I was young and had listened to my concerns which I have always vocalised. I think I would struggle to get them to admit to this day that I will never look physically normal even though I have a strong medical background and am nobody’s fool! I’d advise anyone who has recently been diagnosed or is concerned about their delayed puberty to insist on referral to an endocrinologist and to be very blunt and open about what their concerns are from the outset and about what they hope to achieve from treatment. I’d advise any parent to be similarly insistent on investigation and early treatment and to ensure that the mental well-being of their child is being given full consideration. I’d also absolutely insist that whoever I was referred to had experience of treating congenital hypogonadism or demonstrated that they had sought the opinion of someone who has. These are rare conditions and, from my personal experience, a lot of time can be wasted pursuing poor treatment options if the specialist you see is not experienced with the particular syndrome that you suffer from. By the way, I’d absolutely agree with the previous post, it could be a whole lot worse!

    • Thank you for your reply.

      I have met and talked to a good number of people with KS / HH and while we share the same condition we all seem to handle it in different ways.

      Some of the people I talk to are reasonably content, others find it very hard to come to terms with the condition. It can change through life as well, depending on changes in personal circumstances.

      What I can safely say is that early diagnosis and early treatment counts for a lot with this condition as does the ability to talk to and meet others with the same condition. It allows people to put having KS / HH into perspective sometimes. While on one level it is not a life threatening or life shortening condition, it still can affect people on the pyschological level without anybody else even knowing you have a condition.

  2. Not ever being able to compete in sports or having a coach or being on a team has been a detrement in my career and personal relationships with ‘normal’ men. True also in relationships of the heart.

  3. P OMALLEY permalink

    I AM A PITUITARY SUFFERER. I HAVE NO PITUITARY. I HAD A CRANIOPHARYNGIOMA IN 1974 AND PUBERTY DID NOT HAPPEN. IN THE LAST FEW MONTHS I HAVE GONE ONTO A TESTOSTERONE GEL, I CONTROL HOW MUCH. I COULD RELATE TO YOUR VERY
    HONEST BLOGGER ABOUT SEX DRIVE. I HAVE NEVER HAD ONE!
    MY HYPOTHALAMUS WAS BADLY DAMAGED DURING THE OPERATION. NO EXPLANATION ABOUT THE PROBLEMS I WAS HAVING WERE EVER GIVEN. I ALSO HAD A EECTION OF MY BRAIN REMOVED. I ONLY FOUND OUT ABOUT THAT A FEW YEARS AGO.
    I AM ACUTELY AWARE THAT THERE IS LITTLE OR NO HELP OUT THERE FOR MEN WITH TESTOSTERONE PROBLEMS. BELIEVE ME I HAVE LOOKED. I AM A MEMBER OF THE PITUITARY FOUNDATION, BUT EVEN THEY HAVE LITTLE INFO ABOUT THE PSYCHOLOGICAL PROBLEMS THIS CAN GIVE A MAN. TONTHAT END, I WAS INVITED TO WRITE AN ARTICLE FOR THEM, BACKED UP BY AN ARTICLE BY A PSYCHIATRIST.
    I JUST WANT SUUFERERS TO BE AWARE, THERE ARE MORE MEN OUT THERE SUFFERING.
    ISN’T IT TIME WE HAD SOME PROPER HELP AND COUNSELLING TO HELP U.S. COME TO TERMS WITH OUR AILING BODIES.
    PETER. LEICESTER

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