Gill's Story

LIVING WITH SOMETHING YOU DON’T KNOW YOU’VE GOT!!

It was June 1972, I was 14 years old, had lots of friends, lots of fun and generally enjoying life to the full.  I turned 15 late July just after school broke up for the summer.  During the 6 weeks of the school holiday I seemed to turn into a different person.  I put on weight (especially on my Torso) and my face became extremely puffy (kind of moon shaped) with my eyes nearly disappearing due to the expansion of my cheeks.  I grew hair on my upper lip, my menstrual cycle (which had not long started) stopped and ugly purple lines appeared on the tops of my arms, legs and hips.  After a while every morning when I woke up, my pillow would be covered in hair making my thick hair become very thin.  I also noticed I always felt like I had just been running, out of breath with a continual quickened pulse rate.  I became very introverted and walked staring at the ground so nobody could see my face.

I went back to school in September and the new me lost all but a couple of friends.  I was definitely no longer part of the “In Crowd”.  I tried to lose weight and lived on Marmite sandwiches (made with slimming bread) and water.  I exercised every morning and every night in my bedroom.  Nothing but nothing made a different.  I had no control over the way I looked.  My mother being more concerned about my affected personality than my looks kept taking me to our local GP.  He asked me if I was pregnant (I was very embarrassed about that question).  He told my mother not to worry and at my age I was just going through puberty.  My dad took me for Electrolysis treatment as having a moustache was really getting me down.  Electrolysys was painful and although the hairs were removed they just grew back again but I persevered and ended up with quite a bit of scarring. 

My mother by this time was determined to get to the bottom of things and relentlessly kept taking me to our local GP.  In about April 1973 she took me to the local doctors surgery again, and it just so happened I saw a doctor who had previously seen me as child (I didn’t often have to see a doctor so I was virtually unknown at the surgery).  He could see that I was nothing like the child he had once seen and said to my mother that it could be something to do with my hormones and that I should see an Endocrinologist.  My parents did some research and ended up taking me to a 30 minute appointment to see someone in Harley Street.  By this time they were at their wits end not knowing what was happening to their daughter.  My mother and I walked into the office of the Endocrinologist.   He didn’t examine me or ask me anything.  His first words to my mother were “I know what your daughter has and I am afraid she is going to have to have major surgery and after that surgery she will have to take medication for the rest of her life”.  He continued to explain the surgery would be to remove both my Adrenal Glands.  We then arranged to see him at his clinic at the Middlesex Hospital the following week where I would be admitted for tests.  Even though I am now 62 years old, I will never forget that day.  My mother and I both cried hugging each other in the back of the London black cab taking us to the station to go home.  Somewhere along the way I found out I had something called Cushings.  After months of tests I was told that, yes, the surgery would go ahead at the Middlesex Hospital and I would receive a letter giving me a date to be admitted.  By this time I remember feeling relief and almost excitement about the possibility of becoming normal again.  I had experienced a very difficult and strange 12 months along with my parents who felt totally helpless, but now we could all hopefully see a possible positive outcome.

On 21st September 1973 having just turned 16, I was taken to the Operating Theatre at 8am and I had both of my Adrenal Glands removed.  It was a major surgery procedure and took many hours.  My poor parents went through absolute agony in the waiting room. 

I remember the night before my surgery as I was trying to get to sleep, I was thinking that this was the last day of my life when I wouldn’t have to take medication.  Strange really but I had come to terms with it knowing that I had to brush my teeth every day so what was the difference.  I think we all have different ways of dealing with things and in the last 12 months I had learned to put things in perspective. 

I will finish off by saying that on January 3rd after the Christmas and New Year holidays I was allowed to return to school.  As I walked into the Common Room of my last year of school a teacher who I knew from the previous year stopped me and asked me if I was a new pupil and could he help me?  I told him who I was, his mouth dropped open and as he was speechless.  I just left him there, now knowing for sure I was back to my normal self again!!  In fact, most of my class mates just stared at me when they first saw me but I didn’t mind a bit.  Everyone knew I had been ill and had been away in hospital for treatment, but nobody knew any details.   This whole thing had affected a lot of people in different ways, my family, my friends, my teachers, my local doctors and of course me.

I believe this procedure is no longer carried out for Cushings as medical knowledge since that time has greatly advanced.  Then again, I was lucky as I think if it had been my sister who is 10 years older than I am, they wouldn’t have known what to do at all.  I have had wonderful medical care these 48 years.  Unfortunately, it didn’t end back in 1973 as the removal of my Adrenals caused a rare type of Pituitary Tumour at the age of 18 which I am still being treated for today.  However, that’s another story in itself!!!