Being faced with a condition that has life-long implications is strange. It's not like having your appendix out. Everyone knows what's involved there— after an uncomfortable few weeks you can resume a healthy, medical-free life.
With a pituitary condition however, even if hormone levels are restored to "normal" with adequate suppression or replacement regimens, there may not be a parallel feeling of being fit and well again. Patients may still feel a reduced overall capacity.
"I wish I could carry on with my life as normal."
"I had my tumor removed two years ago, have not had radiotherapy, and am not on drugs. I am "cured" but still get extreme fatigue on any exertion. I have just returned from holiday and am exhausted. I just wonder if it is a thing I will have all my life. I am now 58. Life is an uphill struggle."
Pituitary disease can make you feel under par for a long time.
A special feeling of "flatness" often arises shortly before medication is due. You may feel that key elements of your character (like having boundless energy) have changed. You may not feel like "me" any more.
Fundamental unknowns enter your life. The future becomes uncertain and dreams may evaporate. Why did I get this? Why me? Is it inherited? Will my children get it? Will it regrow? Will I see my children grow up?
In many cases diagnosis may have taken a long time. This may have strained relationships within the family, at work, and with the local family doctor. At home, simple things may have become major irritants, like the snoring that may accompany acromegaly, or depression associated with high levels of cortisol, or tiredness associated with growth hormone deficiency. Sexual relationships may also have deteriorated.
Depression is common, although patients may be reluctant to admit it.
"I have sufferedfrom depression in the past, and I now believe this may have been related to the Cushing's."
"Psychologically, I suffered quite badly before the diagnosis. Although I had always been sure that something was physically wrong with me, I had been treated continually for stress/mental/depression-related disorders. The actual diagnosis of a "microprolactinoma" (whatever that was) was a great relief and confirmed what I had thought for years."
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