Obtaining a Cushing’s Disease Diagnosis Was ‘Half the Battle’
Welcome to “Half the Battle,” a new column about my experience with Cushing’s disease. My name is Caitlin, I’m 30 years old, and from the U.S. Northeast. I was diagnosed with Cushing’s disease six years ago. My hope for this column is that it will provide insight into what life looks like for those living with invisible conditions and dynamic disabilities.
At 20, I was studying abroad in England and found myself feeling unwell. Something didn’t feel right, but I wrote it off as being homesick. I had been living with endometriosis for several years by then, and struggling with the symptoms. However, this felt different. I was so tired that no amount of sleep seemed to satisfy my body. I figured that things would improve once I returned home, but they never did.
New symptoms began to emerge over time, but I still attributed them to the adjustment of returning home after studying abroad. I was having frequent migraines, and worsening symptoms of anxiety, brain fog, weight gain, insomnia, joint pain, and stomach issues, and the list continued to grow. Initially, I thought it must be related either to my current medication, the way I was eating, or being stressed out as a college student.
Those excuses got old over time, and after months went by, my frustrations grew. I knew something else was going on. But after several doctors’ appointments, a change in medication, and bloodwork, I still didn’t have the answers I was searching for.
This was just the start of my journey with Cushing’s disease. It would take over a year to finally learn about the disease from my own research, and then several more years to finally reach a Cushing’s disease diagnosis.
I cycled through many different specialist offices, because the symptoms I was dealing with were complex, and it was difficult to pinpoint exactly what was happening. During that period, I had also moved to three different states, which made things even more complicated. I began to track my symptoms a bit more aggressively, and created a medical binder to take to doctors’ appointments. I was in graduate school at the time, and hoping for answers so I could gain some sense of control over what was happening to my body.
I remember reading some information online about adrenal issues, which directed me toward information about pituitary and adrenal disorders. I remember thinking that these issues were rare, so there was no way it could be what was happening to me. During this period, I was also struggling with my other diagnoses, including endometriosis, adenomyosis, and interstitial cystitis. It was difficult to pinpoint symptoms and causes, but I continued to advocate for myself and search for definitive answers. I discovered a specialty center for additional consultations, and it ended up being the key to finding my answers.
It took about a year to complete all of the complex diagnostic testing and rule out other possibilities, as well as taking a break due to having surgery for my other diagnoses. Not to mention having to plan testing around my school schedule, and the fact that I was seeking medical care in another state. Finally, I was able to have a procedure done called inferior petrosal sinus sampling to help aid in my Cushing’s disease diagnosis prior to pituitary surgery. From there, we moved forward with pituitary surgery, or transsphenoidal surgery.
I was officially diagnosed surgically, and my tumor was removed when I was 25 years old, just two days after my birthday.
What was your Cushing’s disease diagnosis journey like? Please share in the comments below.
Note: Cushing’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cushing’s Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Cushing’s.