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Sophie's Story

Hi My name is Sophie, I am 27 years old and I have cried so many times reading the various bios, not because I am scared that I will be diagnosed with Cushing's, because I hoping that finally I have a name for this horrid thing that has taken over my body. I am and architect and have always been energetic and motivated love stress and thrive on a challenge. I have always been switched on. My husband and I married when I was 24 years old and we were very busy in the first year of marriage with work etc. and didn't really think about kids. At that stage I had been on the pill for since I was 18. I am only a shortie 156cm and my normal weight is about 54kgs. About 6 months before we were married I noticed that I was putting on weight, not the kind of thing a bride wants to do, and yet I really wasn't eating or exercising any less. About 18 months ago I went off the pill expecting it to take a couple of months to conceive, nothing happened and I wasn't getting periods.

About this time I noticed black hairs appearing around my nipples (which I plucked immediately and was far too embarrassed to ever mention it to anybody) I also got hairy toes and I have lots of moles and some of these started to get hairy also. I am a really naturally fair skinned and fair haired person too. I was also was very upset about my acne which had also developed, including pimples on my back and breasts. I was working hard and started to notice my neck aching a lot and developed a lump on my neck which wasn't apparent to everyone but I noticed it and also noticed that I was looking more like a hunchback, I just dismissed it as bad posture whilst working. After almost 7 months of frustration and continued weight gain I went to a gynecologist, I underwent many tests including a glucose tolerance test. All fine except one test came back to say that my testosterone level was a little high but still in the normal range. Also I had developed galactorrhea (milky discharge from my breasts) but my prolactin levels were normal. This seems so long winded but It seems that most people have been through this same runaround that I have.

However, from an ultrasound The gynecologist diagnosed me with Polycystic ovaries, he told me also to try not to eat so much and put me on a diet. He also started a course of fertility treatment, clomid. I walked away feeling like a failure, I felt insulted that he put me on a diet, I felt like a failure as a woman also. We did 2 courses of the fertility treatment before the bulk of the rest of my saga began. I came from work one night feeling really run down and that night developed a fever. I went to my GP and he ran a blood test, my white blood cell count was 19 and ESR 36, he said I had pneumonia and sent me off for a chest x-ray. The -ray showed a lesion on my right upper lung which is more consistent with TB than pneumonia, they recommended an CT scan to rule out TB, this again was inconclusive so I was sent to a thorasic specialist who determined that I did in fact have Pneumonia. I got over the Pneumonia and then developed pain in my right side around my kidneys and had also noticed that I experience pain whilst urinating. I tested positive for cystitis and was sent off to have an ultrasound of my kidneys. The ultrasound determined that my kidneys were fine but I had developed an ovarian cist about the size of a golf ball on my right ovary.

I went back to my gynecologist and he recommended that we remove it, but because of my recent pneumonia wanted to wait 2 weeks before surgery. For the next 2 weeks I experienced a lot of pain in my right side and discharged a brown horrible mucousy discharge. I went in for surgery and they discovered that the cist had leaked out at at same time the doctor checked my fallopian tubes for blockages, they were clear but he did discover some endometriosis and cauterized this. It was painful for a few days.

2 weeks later I developed bronchitis, recovered, then got sick again recovered. I had noticed that I had begun to feel extremely lethargic, could hardly keep awake, was falling asleep at my desk etc. I went back to the doctor and expressed my concerns, him I had seemed to suddenly put on a lot of weight in addition to my weight gain around my abdomen and that I was tired etc. By this stage he was tired of me I think, I begged him to please help me feel better and get back to normal, he sent me to another doctor, general physician. This new doctor went through my history etc. and I showed him my tummy and neck and also by this time I had developed stretch marks on my breasts and upper thighs. I told him also that time between seeing my last doctor and him I had developed aching joints. He took all in and he issued a number blood tests (for glandular fever, ross river virus, rheumatic fever etc.) ultrasound of my kidneys, spleen etc. and also lung function tests.

About 4 days later whilst at work I started to type a letter and my fingers and wrists just hurt so much, I new something was wrong and I started to think about things like leukemia and blood disorders. 2 days after this I could get out of bed. I hge doctor and told him what had happened etc. by this time I had done all his tests and so I saw him later that day. He said that there was nothing in my test results to suggest anything wrong other than elevated white blood cell count 13, and ESR 24. He asked me about stress in my life, etc. I told him sure normal stresses etc. but none out of the ordinary for me. By this time I'm thinking he thinks I'm making all of this up. Anyway he told me that I had idiosyncratic arthritis (meaning that there is no reason why this happens but sometimes it can just happen, didn't know how long it might last for etc.) and prescribed 10mg of prednisolone and to ring him the next day and report how I was. WELL!!! Let me tell you I had the worst night I have ever had on record, couldn't sleep at all, my whole body was aching, I couldn't get out of bed in the morning and by this stage my legs were numb.

Incidentally I had more stretchmarks and felt heavier (not just over night but over the 2 week period form the first time I saw him). He told me that he had no choice then but to hospitalise me. I went to hospital that afternoon and just lay in bed, my legs were still numb. he didn't arrive at the hospital until 8pm that night and when he did come he didn't even look at my legs or anything, the pharmacy distributor at the hospital had already been for the night so all he could offer me was panadol and wrote a script for celebrex. He also said that he would make an appointment for me to have an endoscopy and he would see me at some stage the next day. I waited until my husband came in to see me after work and told him what had transpired, he was just as furious as I was, more to the point I felt insulted that I wasn't taken seriously. I asked the nurse if I could please discharge myself, she rang the doctor and he said yes (so why the hell was I in there anyway???).

I haven't spoken to that doctor since. I went home still feeling crappy and continued for about a week this all the time gaining more stretch marks and mysteriously acquiring bruises. I went back to my usual doctor and He told me that from all my past history of illness it was just my body telling me to take it easy and that it was probably just a virus and how there are hundreds of viruses around that we may never know the names of etc. and that I just had to let time take its course. I of course though this was bollix. 2 weeks went buy, thus far I had had 4 weeks off work and still no answers for the best bosses in the whole world, even they I think thought I was making things up, although knowing me and my past track record I think they could understand that I was just as frustrated.

Finally I decided to go back to my usual doctor I brought my mother with me this time for support, showed him my stretch marks, my tummy which was considerably this stage, told him how I was struggling with normal day to day activities, washing my hair, writing etc. He conceded that he didn't know what to do but that it wasn't a virus and that he would refer me to a general physician works in an endocrine clinic. Again I went through my history with this doctor, she was very thorough. she said that she wanted to conduct a number of tests one being 24hr collection of urine for cortisol. I submitted the test and find out the answers this afternoon, I now have stretch mar my tummy, and lot more bruises which won't go away, I am thoroughly depressed and moody, my whole body aches continuously especially my lower back.

When I submitted the test I wanted to know what cortisol was and so I began searching on the web, and discovered Cushing's and I knew for the first time that I had an answer, I then found this website and read about everyone and the ordeals that people have been is comforting to know that it's not just me...I will keep posting more
Thank you

ps sorry about any spelling mistakes I find it hard to concentrate for long periods of time.

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