My story begins well before April 2010, but I will never know exactly when. That is the deception of this horrible disease, it creeps up on you and takes over your body gradually. In 2009 my husband and I were relocated from Michigan to Wisconsin due to job loss. Now that I think back on it, I am grateful it happened. In Michigan, my OB dismissed my weight gain to not exercising enough or eating right and the use of the Depo shot for birth control. I took my last Depo shot before I left Michigan in 2008. Fast forward to April 2010, I was worried because it was 2 years AFTER the Depo shot and I still hadn’t had my period!
I went to see a nurse practitioner. She spent the entire first 45 minute appointment listening to me and asking questions. It felt so good to be finally listened to by a doctor. I told her about the weight gain, not feeling like I was in my own skin, the weight specifically on my back that made me feel like a football player, and the unwanted hair growth. She ordered testing for PCOS. Sure enough, I had a few spots on my ovaries. She ordered me to take Metformin. She said when I visited her next I would have started my period and lost weight! I was SO excited! When I returned, I had indeed started my cycle, but I actually GAINED weight! She knew something was still wrong. She then referred me to Dr. Findling in Wisconsin and said she believed I may have Cushing’s. The hardest part from here was the testing process. But after three months of various tests, Dr. Findling determined I had a tumor on my pituitary gland. I learned about cortisol and stress and the different types of testing and why sometimes a certain test may not show you have it, while another might. Looking back on it, I can’t believe it wasn’t more overwhelming, but I was just so happy to have a diagnosis! I was so happy all of this weight wasn’t my fault. I was relieved my need to be anti-social wasn’t really me. Feeling like someone else was going to come to an end.
I endured the MRI and IPSS procedure as evidence to bring to the surgeon. The first surgeon I went to had me speak with his endocrinologist. And after speaking with him for 30 minutes, he told me that he was 90% sure I didn’t have Cushing’s. I honestly couldn’t believe what I was hearing. I was so emotional at the end that I began crying. Out of the three doctors in the room, no one handed me a tissue. I exited the office and immediately called Dr. Findling who referred me to another surgeon. At Northshore Hospital in Evanston, IL just outside Chicago, surgeon Dr. Ciric met with me and explained everything. He even sat with me and explained my MRI charts and why he believed I did have Cushing’s. He was both knowledgeable and extremely kind. Although I was educated on transsphenoidal surgery, I still didn’t know exactly what to expect. However, everything went really smoothly. I felt so blessed. The worst part of the surgery was the 24 hours after. My body was dehydrated from the anesthesia. I also wasn’t supposed to breathe through my nose, so being really thirsty and breathing through my mouth was tricky. I checked in to the hospital Tuesday morning and left Thursday afternoon. Dr. Ciric and his endocrinologist, Dr. Kerr, were very helpful. They both met with me before and after the surgery. Directly after the surgery I felt happy and my positive, old self again. I didn’t start feeling achy until months 2-4. Then after that, the aches lessened.
Now, just shy of one year post-op, things are pretty great! I am 5 months pregnant with our first child. I lost a total of 25 pounds and haven’t gained a pound of baby weight yet. My mind is my own again. Yes, I do wake up achy sometimes and I am not as quick as I used to be, but my quality of life is back.
I would like to thank Cherri Schleicher, Dr. James Findling, Dr. Ciric (who retired in Dec. ’09 from Northshore Hospital), and Dr. Kerr for their excellent care.
My advice to anyone: be your own advocate. Doctors are human and can/do make mistakes. If you don’t feel right with a physician, there are plenty out there to see. Ask questions. And read and educate yourself!
Newsletter: Summer, 2011