Day 2 of the Cushing's Awareness Challenge: My story
I was 13 when I first started having medical problems, although it would be over 10 years before I would ever hear the word Cushing's. When I was in junior high I started having severe headaches and GI issues. My pediatrician told my mother that the headaches were because I didn't drink enough water, and my stomach issues were from drinking too much soda. (Even though neither of these were problems for me we doubled my water intake and eliminated like the one soda I was allowed to drink a week). The headaches and stomach issues continued. Then in high school I developed cysts on my ovaries. The doctor's explained to my mom that this happens sometimes and at 15 they started me on birth control to try and prevent the cysts. It didn't work.
I went away to college when I was 17. I was doing really well, but I began to gain weight. I was just about 100lbs and 5'4" when I went to school, so everyone attributed the weight gain to the dreaded "freshman 15." Over the next three years my weight would balloon up to 180lbs, I would develop high blood pressure, off the charts cholesterol, and I had a new infection every few months. I saw campus doctors for all sorts of ailments but the thing that finally got my parents involved and had me sent home from college was a psychotic break, essentially. I was placed on a student's in crisis plan my junior year and sent home for treatment.
I was diagnosed as being bi-polar and for the next 5 years I would go through medication after medication to treat the anxiety, depression and sometimes psychosis, but nothing really worked. And when I would complain about other ailments, fatigue, muscle weakness, infections, headaches, pain, weight gain; all of it was dismissed because I had been diagnosed with a mental illness.
After a few years I got into a routine and learned to live with all the symptoms I was experiencing. I saw so many doctors to try and figure things out but either they didn't believe me or they couldn't help me. Eventually I was accepted into medical school at the age of 25, something that had always been my goal. I had been doing fairly well, but the stress of medical school and the long hours and constantly being surrounded by sick people sent me spiraling into a tailspin medically. When we learned about Cushing's in class a lightbulb went off for me. I had nearly every symptom that was a hallmark of the disease, and I actively started seeking out an Endocrinologist.
It would take me two years and 4 Endos before I would get a confirmed diagnosis, and another six months after that before I made it to surgery. There were many times I wanted to give up. So many doctors, friends and family who told me I was crazy, lazy, depressed, attention seeking, or that it was all in my head. Well, it turned out it was. I had a pituitary tumor causing Cushing's Disease, which is what was causing all of my symptoms. If I had not been like a pitbull in pursuing a diagnosis I might not be here today. That is why Cushing's awareness is so important to me. There are many people out there undiagnosed, and I hope by bringing attention to this disease that people will find help like I did.
It's funny that you mention the freshman 15, because that is going to be in my next post. I think most of us cushie's have it most of our lives (since puberty pretty much). I had horrible acne in those years and never knew why. Also developed asthma, ecetera. I've always been emotional, too. My worst fear was being deemed crazy. The problem is nobody knows what it is, like you said. I had no reason to think I should check my Cortisol! I didn't know what that was either! By the time the disease is more obvious it has done a lot of damage. Looking forward to reading more!
ReplyDeleteYour blog entry resonated for me. Just had my adrenal gland removed five days ago. Am hopeful for a full recovery but am willing to take my recovery one day at a time. I'm sending you all my saved-up karma points! Did you make it through medical school? All three of my kids are in medical school right now! (I hope one of them chooses endocrinology as a specialty!)
ReplyDeleteThank you for the karma! Good luck in your recovery. Unfortunately, I did not finish medical school, and with all my friends completing their residencies next month, it is bittersweet. But I hope I can still help people with my experience. We definitely need more great endocrinologists, especially one's familiar with Cushing's. Good luck to your children! :)
DeleteAfter reading the preceding post and now this, I fear that I too may have this disease. I too suffered from bad acne since the age of 11 and still suffer from. When I was 17 I was diagnosed with pcos and have been on metformin, birth control, and duphaston. I have hirsutism, and I also have stretch marks which you mentioned were a symptom. I first noticed them when I was 11. I appreciate you sharing this information. I'm glad I came by it. I hope I don't have this disease, but if I do, then I have to take care of it. The sooner the better.
ReplyDeleteThank you so much for your succinct description of what has happened to you. My daughter has had almost identical problems (we're in the UK). The symptoms are almost the same as yours, with the addition of uncontrollable mood swings, either hysterical laughter or screaming fits of rage. She has also had acne, hisuitism and huge weight gain.
ReplyDeleteShe also had the bi-polar diagnosis and horrible drugs to treat it. One doctor told her, unbelievably, to tie her hair back and get some self esteem!
A broken marriage didn't help when her husband thought she was just mad and lazy. Its only now that she has had a cushings disease diagnosis that she has a ray of hope in the darkness of the last 7 years. During that time she has been bed bound for months at a time, joint pain, inability to speak properly or retain information, unable to take care of herself, and THEY decided it must be M.E. On a mitochondrial function test she had done privately, it showed a physical functioning level of 15%.
The problem with that diagnosis is that you start to believe you have no choice about treating it, there is no treatment for M.E. After her own research, and a cortisol test she again had done privately she asked her doctor to refer her to an endocrinologyst. What a breakthrough that has been. They found a small tumour in the pituitary gland and she is currently undergoing more tests to see if an operation to potentially cure her can go ahead.
The best thing about this site is that someone may actually get a clue what is wrong with them. When doctors fail and you have to research stuff yourself this type of forum is a godsend. You have shown me that cushings does have these terrible symptoms, but it actually is possible to treat the condition.
After feeling bereft at the lost years, and probably no future, the hope of getting well is the most important thing that has saved her (and my) sanity.