There are quite a few instances where a 'tumour' is diagnosed in the testicles of a CAH male and more often than not it is 'adrenal rest' tissue mistaken for a tumour/cancer.
Sadly sometimes they are removed when they do not need to be. The treatment is to take the corticosteroids either hydrocortisone, cortisone acetate, prednisolone or dexamethasone (whatever your doctor orders) and then these 'tumours' resolve. So yes, these things do definitely occur because of not taking the medication, which send all the adrenal hormones into a wild out of control spiral BUT obviously it is important that the testicular mass is well checked out to definitively exclude cancer first.
Robbie let me say that it sounds like you may have the Simple Virilising form of CAH which is also a severe form but without overt salt-wasting. Some genetic testing would determine this for you.
Regarding taking your medication, I can say I do understand what you mean as I have done the same thing. There are times particularly at your age when we don't want to take our medication as it makes us feel different from our friends, we can't feel/see any obvious benefits in our health but most of all we haven't proved for ourselves that we have this condition - we are only going by what we have been told by our parents. In some ways we are wanting to prove that they and the doctors got it wrong.
Now obviously depending on what CAH mutations you have will determine how soon and how severely you will start to go downhill without taking your meds. It's now five years - are you feeling/noticing anything at this stage? Without treatment your fertility could be affected. You may start to feel tired/exhausted, persistent acne, your skin may start to darken (hyperpigmentation), you may get stomach/back pains, you may get sore and weak leg muscles, weight loss and if very severe start to vomit and become dehydrated.
BUT before all of this happens, though you are at continual risk if you are not taking your medications of having a crisis especially if you have an accident or experience some sort of major trauma or illness. Your body may not produce enough cortisol to help you get through.
On a brighter note Robbie it's good that you grew well beyond the predicted expectations to 5'6". You must have been doing something right, haha!
Glad you found the message board. Hope you learn heaps.
