For this reason, in the early teens, about the time that puberty would occur in most girls, oestrogen therapy is normally begun, and eventually progesterone must be added too, and in most women this will cause a cycle to develop with a menstrual bleed the same as a period. Depending on whether growth hormone has been used, and the success of that treatment and the desired final height, pubertal induction may be delayed for a few years (see the post to come on growth hormone therapy for more information on this).
There are many routes and forms of sex hormones which girls can be offerred (as a pharmacist I have a clue here ;) ) but it can be very confusing to girls and their families, and the doctors treating them! The most important things to remember is that oestrogen therapy alone is not enough - in any female still possessing her uterus, progesterone must also be given or it increases the risk of uterine cancer!
Some women are given the contraceptive pill. This tends to be slightly lower dose of hormones than would be present in hormone replacement therapy (see below) and must be the combined oral contraceptive pill - the mini pill has only progesterone, no oestrogen. It is taken for 21 days, followed by a week's break before starting the next strip. The lower dose is because it is designed to just supress ovulation in women without Turner Syndrome, and the week's break is to allow such women to have their period - but in our case that means a week each month with no hormones at all, unless you tricycle (run three strips together and only have the break every three months).
However, what most women will take will be.....
Hormone replacement therapy. Again, this isn't really designed for our situation, it's for older ladies going through the menopause - but it does the job, it's what we need, and replaces what we should be making. It comes in tablets, either cyclical (you get a monthly bleed), combined continuous (oestrogen and progesterone together everyday - no cycle (yay!) ), patches, a mixture of tablets and patches, gels, there are so many possibilities! Some women get side effects with some (sweats, mood swings, weight gain) but as hormone levels settle they should pass, but in any case, there are so many options - don't suffer, see your doctor and discuss it and try something else!
So why do we need to take it anyway? Does it matter that we don't make hormones? Why do we need them? The main reason is for bone strength. Oestrogen is imperative for development of bones in women, and without it we would be at much greater risk of osteroporosis and fractures. It aids with breast development and other secondary sexual characteristics, and will ensure more comfortable relations with a spouse by preventing dryness.
There is much talk around the fact that there is not much experience in using HRT for extended years as we require, and what there is suggests increased risks of some cancers, and that benefits of treatment should be balanced with the risks. The way I think of it is this though: this is for post-menopausal women extending their oestrogen years. In our case, we are just replacing what should naturally be there, and as long as we have a controlled withdrawal of treatment about the age of a natural menopause, these worries should not really concern us. It is far more important that a woman with Turner Syndrome gets the oestrogen years she needs to build strong bones for the future.
Please comment with any questions (I will try and help). What kinds of HRT are women on? Has anyone had any problems and what did you do about it? What age did you older ladies stop? Any women decide against HRT and why, and what did you do to protect your bones instead?
