I too am a Cushing’s survivor, and this is my story. Looking back, I think my symptoms started shortly after I was married in 1986 at the age of 29. I had been skinny all my life and suddenly started gaining weight. Given the change in lifestyle, I was told that this was normal. I joined Nutra Systems, lost the weight, and was still loosing weight even after I started eating normally again. I figured that my old metabolism was back. Wrong…my system did another flip flop and I slowly started gaining again. In 1990, I vividly remember sitting at my desk at work, stretching my neck back and feeling the fat in my “humpback” neck. Having never been extremely overweight, I didn’t realize how unusual this was.

At the same time my eyes seemed to have red oil in them, which I thought was allergies. Then started my acne, so I saw a dermatologist who provided few answers. I finally went to the eye doctor, where I came the closest to the correct diagnosis of a “glandular problem”, possibly thyroid. I was tested for a thyroid problem, but all of the tests came back normal.

So, I kept on going, working very hard 40 hrs. per week at my job, working at my husband’s new business after work, and taking care of the house and yard while he concentrated on his business. I felt like I was going 100 MPH. In 1992, the mustache started. After a while, my husband started calling me “Mr.”, and I underwent electrolysis, which can be painful. I did talk to my regular doctor, who said it was a hormonal problem and to call him again if it got worse. I finally saw my doctor in March of 1992, for shortness of breath, abdominal pain, the weight gain, irregular menses, and joint pain. Again, no answers, just call me if it get’s worse.

Well, I am a happy, go lucky type of person, and chalked many of these problems up to stress, which my doctor was aware of. In October of 1992, I saw an allergist for my eyes and skin. I was allergic to everything, so he put me on antihistamines. After a couple of days, I was back in his office in panic because I couldn’t breathe. The diagnosis this time was a lung infection. I had also been bruising, but didn’t think much of it given my active life. When I bruised from just pressing on my arm with my thumb, I knew something was wrong. At that point, I was very alarmed and called my regular doctor. Needless to say, when I saw my doctor, I was like a mad woman with all of the above complaints, plus a big red round face, stretch marks, sweating like a pig, panic attacks, hyperactivity and an overall feeling that something was terribly wrong with me. After patiently listening to me, he very calmly said he thought he knew what was wrong with me. He told me he was going to do a blood test that would probably be inconclusive, and he proceeded to read to me about Cushing’s out of one of his medical books. He told me that sometimes it can take years to obtain a correct diagnosis for Cushing’s. That blood test did come back negative, but I ended up seeing a wonderful endocrinologist.

On my first visit to the endocrinologist, he told me that he would do everything in his power to find out what was wrong with me. Within a week, he had positive results from blood and urine tests and sent me immediately for an MRI. He then called me with the news that I had a growth on my adrenal gland and needed surgery right away. I was so pleased that he had found out what was wrong with me! Then panic set in. I called him back. What do you mean a growth? He said yes, it was a tumor, but I didn’t want to scare you. Now I really was scared!

I had my surgery in January of 1993, spent 3 days in intensive care, and was sent home two days later. I had a 7 ounce benign tumor on my left adrenal and my right adrenal had totally atrophied. When I got home from the hospital, I was on 90 mg of hydrocortisone, and in immense pain. My incision was approximately 10 inches long on the left side of my back, and the surgery also involved breaking a rib . I was at home, very miserable and in need of someone to talk to who had gone through the same thing. My doctors said that Cushing’s was very rare and that they did not know of anyone else. The feelings you go through after surgery, withdrawal, insomnia, and pain. Even now, it is hard to describe, but you get through it. I don’t know how, but I went back to work in March, looking like a balloon and feeling absolutely terrible.

I was finally weaned off the steroids by September of 1993. I was 190 lbs. at surgery and lost 40 lbs. during the next year. I tried exercising and herniated a disk in my lower back, which was a huge setback. I took a bone density test because I ached all over, and discovered that I had the bones of an 80 year old. I was told, take calcium, and don’t worry about it. My stomach was still big, and I was still being asked “When are you due?”. I started telling people that I was just fat, and that stopped the questions! Finally in August of 1995, my OB-GYN discovered huge fibroids that were causing my bloated stomach, irregular menses, and pain. I had a hysterectomy in September of 1995, went back to work and again herniated my lower back. It is now February of 1996, and I am slowly getting around again and am starting a new job.

I know this is a long story, but I write it to let you know that you are not alone and that we all can continue with life. I would like to thank my family and friends who were there for me through everything, especially my husband Bob who is my rock!! I strongly feel that if the diagnosis came sooner, Cushing’s would not reek as much havoc with our bodies before and after surgery. It has been 3 years since my surgery, and the beginning of my quest to talk with others who have had Cushing’s. Finally, in December I met with two others, and did we talk and laugh! I feel very strongly that talking with others does help. So to all of you, please communicate, think positive and no matter what, keep going on with life, it will get better!

Member: 080432
Newsletter: Spring, 1996
State: California