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.