Pituitary News, Issue 15 - Spring 2000.

One member describes her experiences with the symptoms of Cushing's through diagnosis and treatment and living with the condition.

by D.E.A.R., Cardiff

My problems began in 1974 when two things happened which were to change the course of my life. I was 26, happily married and pursuing a highly successful and promising teaching career in Kent. My periods stopped suddenly, and I fell into what I can only describe as a deep depression. In a space of a few weeks I felt I had changed from my confident, energetic self into a frightened being who could no longer face the challenge of the work I loved.

I was given Librium for the depression, and tried my best to keep on going. In the meantime I was referred to a gynaecologist - I was lactating constantly which was very strange. At first, I lost a lot of weight, and soon developed a severe and incapacitating lower back pain, which led to orthopaedic investigations and, eventually, the local pain clinic. In 1978 I suffered a prolapsed rectum - were my muscles that weak? What was happening to me? In 1981 I had a repair operation - my first major surgery.

I began to put on weight in my trunk area, and my face got more moon shaped. By this time we had moved to South Wales. Things were really going down hill, both physically and mentally. I was still teaching, but I didn't feel the same as I had in Kent. My self-esteem was disappearing rapidly, work which I used to do with the utmost of confidence became something fearsome - I became afraid of everyone and everything. I felt that the world was against me. Other people's conversations became just mumbled words, none of it made any sense!

It was heartbreaking to feel that my situation at work was changing; my colleagues did not understand. I knew I was ill - very, very ill, but the doctors didn't seem to hear what I was telling them. Why did no-one believe me? They sent me to endless psychiatrists over the years for what I'm sure they thought was some kind of neurosis. Was I really imaging it all? Perhaps I wanted to be ill? Surely not! What I do know is that the repeated rejection and loneliness I felt at the time have left a lasting impression on my life. I feel I have lost at least ten years of my life - important years, when I should have been living normally.

I suppose I was a determined sort of person in that I kept on working whilst also trying umpteen complementary therapies - all to no avail. People told me I was brave, but I didn't feel it, though in retrospect, I suppose I must have been strong.

When in 1985 I was told by a general physician, whom I saw privately, that in his opinion I had Cushing's disease (very rare), I was so relieved that someone believed I was ill! My problem now had a name. It was ruining my life; I'd become very weak and my skin was so thin it would tear and cut badly just by touching things.

Despite having been diagnosed positively, I was transferred to another hospital - the University Hospital of Wales - which had more expertise in endocrinology, only to be told that - no I didn't have Cushing's. Unknown to anyone, it seems, cyclical Cushing's had reared its ugly head (now you see it, now you don't).

I cannot imagine the worry my husband went through during all those years. He gave me the only security I had left in a life which had become unbearable. There was no longer any chance of us having children, though how I'd have coped with them I do not know.

I know that mine is a complicated story, not easy to tell in a few words - its's difficult to express the full horror of it. However, after an accident in school in 1986, I was advised to finish work and look after myself. Of course, the Cushing's disease was still there, and eventually in 1987 I had an operation on my Pituitary gland - second major surgery - which was meant to make me feel better. The problem was that while I continued to feel ill for the next year or so, I had to struggle to convince the 'medics' that all was not well. "We all know our own bodies!" I told myself. When it was realised that my operation had not been successful, I ended up having both Adrenal glands removed (a bilateral Adrenalectomy) - third major surgery. This was followed by five weeks of daily Radiotherapy on the pituitary gland.

Now, more than ten years later, I have discovered the Pituitary Foundation and the Cardiff Local Support Group. I now have four close friends who've had Cushing's - if only I'd met them 25 years ago when I had no-one to talk to. I'm sure it would have saved me a great deal of mental trauma.

Life is so much better than when I was in the depths of depair and fearful of the unknown, but it is not always easy to adjust to dependence on supplementary drugs.

I don't have the energy to do the things that others of my age cope with easily, and this is sad and so frustrating. I suppose that at 52 it is now time I acquired the 'serenity to accept the things I cannot change, and the courage to change the things that I can'!