The journey to receive my diagnosis of Cushing Syndrome was very tough on me physically, financially, and emotionally. Ultimately, the key to being cured was a mix of doing research, being in tune with my body, advocating for myself, and not taking no for an answer.
I was young, active, and in the best shape of my life. It’s hard to pinpoint exactly when I started noticing symptoms, but it began gradually. At first, I had body aches and trouble sleeping. Being aware and in tune with my body and knowing something was wrong led me to become my own advocate.
I decided to make an appointment with my primary care doctor. She did basic blood tests and vitals. She became very alarmed when she saw how high my blood pressure was and recommended I go to a cardiologist immediately. At the cardiologist, many tests were run over a 2-year timeframe. I knew that at age 23, I should not have unexplained high blood pressure.
I exercised regularly and had a mostly healthy diet, but I noticed rapid weight gain that didn’t make sense to me. At first, the doctor thought the high blood pressure could be due to the birth control pill. So, I quickly came off them. However, my blood pressure remained alarmingly high, putting me in the hospital several times.
My period became irregular and I developed facial hair, leading my OBGYN to believe I had PCOS. I would advise anyone going through noticeable changes not to be afraid to bring it up to doctors, no matter how uncomfortable and awkward it may be.
Soon, I began waking up with bruises covering my body without explanation. My primary care physician recommended that I see an oncologist. Some bloodwork was done, but nothing significant was found. The oncologist said that sometimes this happens with aging.
My physical appearance was rapidly changing. Despite the rapid weight gain, I got ‘moon face’ and a buffalo hump. My lower face became very rounded and retained fluid as the back of my neck developed a large hump. I remember looking in the mirror at myself one day, and I did not recognize myself. I was so confused.
Ultimately, the key to being cured was a mix of doing research, being in tune with my body, advocating for myself, and not taking no for an answer.
I was disgusted with my physical appearance. The weight gain and facial hair had me shaming myself. I felt gaslighted by doctors, who told me I was unhealthy and lazy and prescribed anxiety medication. I knew something was wrong, but I felt like no one believed me after a while. I felt like I was such a burden on my friends and family. I was constantly complaining to them. I have tremendous guilt for that. I also resent the doctors who didn’t listen to what I was saying and dismissed it as something else.
Throughout this entire experience, I suffered severe anxiety and depression and later found out that was one of the main symptoms of my tumors that caused the overproduction of cortisol. I developed insomnia — only sleeping 3-4 hours per night. I struggled with insecurities about my new appearance and would go to the gym, workout classes, and work hours on end. I was burning 2,500-3,000 daily while experiencing rapid weight gain.
In the end, it was me that compiled with all my symptoms and figured out I should see an endocrinologist because some of the signs led me to believe the issues were hormone related.
After several tests and MRIs, we found a tumor on my adrenal gland that was causing the overproduction of cortisol, leading to all these issues. In April of 2023, I got an adrenalectomy, where my left adrenal gland was removed. Since then, my body has been slowly adjusting to hormone replacement, and I am taking it day by day. I’m grateful for the support of my friends and family throughout this process.
You know yourself better than anyone else. If something persists, put your worries and finances away, and put your health first. Listen to your body, or it can be detrimental. Get multiple opinions and know that the best advocate is yourself.
Symptoms
- Muscle and joint pain
- Insomnia
- Swelling and bruising
- Weight gain
- High blood pressure
- Facial hair
- Memory loss and trouble concentrating
- Anxiety/depression
