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Kallmann Syndrome & Infertility.

March 12, 2011

When I was in my late 20’s I had a conversation at work with two female colleagues during which  one of them asked if I wanted children. For some reason I said “I can’t have them”. To which they replied “How do you know that ?”. I could not really answer that question.

It is a difficult question for people with KS (or IHH) to answer as they can not give a full description of the medical condition in a casual conversation. It is an area that can affect both men and women with KS a lot. It can have a damaging effect on relationships especially if one partner changes their mind on the prospect of having children after the relationship has started.

Infertility in couples is not that rare, but if you know before the relationship starts there is an infertility issue then I think it should be made completely clear before the relationship gets too serious. Only a personal point of view of course, but I think it is fair on both sides. Of course this only applies if the relationship gets to that serious stage where settling down together might become an issue.

There is actually quite a good success rate for both men and women with KS undergoing fertility treatments. Though with the men it does depend if there was any testicular damage early in life, but on the whole most men who undertake fertility treatments with injections can achieve a certain level of fertility from anything from 6 to 18 months.

It is a good idea for people with KS to consult a specialist reproductive endocrinologist at this stage. Very few endocrinologists will have that many KS patients on their books, let alone ones trying for fertility.

There are options out there. A common one is the use of Pregnyl, a form of hCG. This can be effective in stimulating testosterone production by the testes, and some men with KS use it just as a form of hormone replacement therapy. If you don’t mind injecting yourself twice a week it can be very effective.

In some men the use of Pregnyl alone can stimulate sperm production, but most need another injection of a hormone called FSH. This is where the problems can arise.

Pregnyl is relatively cheap and easy to get hold of. FSH is expensive, difficult to produce and can be restricted in some areas. In the UK it still depends on where you live as to whether you can get FSH or not, even though it has a proven successful track record with men and women with KS. Even though it can be a major hassle getting the fertility treatments, the end result has to be worth it.

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