Surgery and How I Got Here
Hello all! It’s been such a long time since I last made a post. So much has happened to me. So much has changed. I’ll start with some life changing stuff first. I had surgery in April of 2024 (nearly a year ago now).
It took me a long time to get to that point. I noticed that my health and my overall state of being wasn’t quite right. I just wasn’t feeling like myself. I started out by going to my primary care physician (PCP), and I felt dismissed and greatly understood. My labs were “normal”, and I was told that I just needed to focus on sleep, exercise, drinking water, a healthy diet, and acknowledging I was getting “older”.
I was not satisfied with this response. I started doing some digging and some investigation on myself. I opted to seek further treatment from an endocrinologist. I had expressed my concerns and how I felt. She also said similar things my PCP said. But, she opted to run more labs and more tests.
Meanwhile, I met with my naturopath physician to make sure I was covering all my bases. I didn’t want to leave any stones unturned. I had a Dutch test done on my urine. I tried it all. I learned that not all doctors respect other doctors tests and forms of medicine. I mean, it’s all backed by science, so what’s the issue?
BUT, before I went to see my endo. I opted to fly to Colorado to meet with a different doctor that my friend had a lot of success with. Needless to say, she was a dud for me. She tried diagnosing my with PCOS based on no further testing. Cushing’s is oftentimes misdiagnosed for PCOS. I was on medications that did not help or support me. Luckily I went with my gut and opted not to take those medications anymore, and move forward with meeting my endo.
I got a sleep study done, because of my excessive daytime sleepiness. Let me tell you. I don’t know how those studies could tell you anything. It is literally the worlds worst sleep. You’re in an unfamiliar place looking the scene in Star Wars, where C3PO and R2D2 get all dissembled with wires everywhere. It was so uncomfortable, and they wake you up a million times. After all was said and done, the results were, “You do in fact have daytime sleepiness”…..NO SHIT!
I had mentioned my ADHD and anxiety, and my endo wanted to blame all of my symptoms on that. Like, I’ve ADHD and anxiety my whole life. My sudden change in weight and everyday functionality is not a result of these things. Something else is wrong, and it isn’t that or the medication that I sometimes take for my ailments.
I continued with more labs and 24 urine collections. I got a CT scan, and it came back showing that I had a 2 inch mass on my right adrenal gland. I was kind of surprised, and excited, because I was FINALLY getting closer to some sort of answer or diagnosis.
SO, after nearly a year of almost 20 different labs and tests, she then referred me to a super specialist endocrinologist at the main hospital. My labs were in this gray area, and I wasn’t satisfied with my answers. My labs were 50/50 for Cushing’s.
I met with my second endo, which my first meeting was abysmal. It was her resident that I met with…a guy. You see the thing is, I always request women doctors. I feel more comfortable with them, and I usually feel understood. When I got into this appointment (which I waited 4 months for), I was a bit disappointed to see a guy. He was very dismissive of my self diagnosis. I was under the impression that I had Cushing’s. He did not.
So, I got more labs and more tests. I got a second CT scan that confirmed the 2 inch mass on my right adrenal gland. Due to the size of the mass or nodule, they were going to opt for surgery, regardless of the results on my labs. But, my labs came back supporting the findings.
I think met with my surgeon. We discussed my pre-surgery expectations and scheduled my surgery. He was the one that told me I had Cushing’s. I felt relieved and accomplished. I had finally had an answer. All of my self advocacy was finally paying off. (Huzzah!)
So, I had my surgery on Thursday, April 18th. It was the first surgery I’ve ever had. I was nervous and not nervous at the same time. I remember the operating room. I remember how kind everyone was. I knew that I was in good hands. I remember waking up to see my mom and brother in my room. I was so tired, and kinda nauseous.
My time in the hospital after that was interesting. My IVs kept blowing my veins. I had put myself on a liquid diet a week prior to surgery, per my surgeon, and I hadn’t eaten real food. Post-op, I was so repulsed by food, but I had to eat. I couldn’t go to the bathroom without help out of bed. They took my blood from a vein that was receiving fluids, and it through everyone into a panic, because obviously my labs were dangerously wrong. So, I then had to become a human pin cushion every 1/2 hour to run my labs again to make sure I wasn’t going to die. Good times! Did I mention the IV blew my veins 4 times?
Overall, the worst part of post-op was trying to pass all of the gas or CO2 they pumped into my abdomen. It was HORRIBLE. The pressure had moved up into my chest, and it felt like someone was sitting on my chest. I couldn’t breathe. I only felt comfortable laying down. It took about a week for it to finally dissipate. Just in time for me to head back to work!
Then 6 weeks post op, I had to fly to Wisconsin/Minnesota to take a rock climbing assessment. Haha wild times.
Anyways, I am healed up from the actual surgery. Sometimes I feel like a little part of me is missing. They ended up taking out my whole adrenal gland with the mass. So, I am left with just my left adrenal gland. My cortisol levels have evened themselves out for the time being.
But here’s the kicker. Since surgery, I’ve had follow up appointments and my endo was like, “You don’t have Cushing’s, you have MACS”….I’m like, what are you talking about. My surgeon said I had Cushing’s and that having this surgery would cure me. Apparently I have a subclinical form of Cushing’s. MACS, which stands for Mild Autonomous Cortisol Secretion. (Mind was blown)
With this condition that I have, it’s an overproduction of cortisol in a system. So, imagine being in a state of fight or flight for so long that your body starts packing on weight to protect itself. That’s how I ended up where I am. It’s wild and exhausting. It’s a condition that takes time to recover from.
Folks keep asking how I am, and I honestly don’t know. I feel the same, but different. I’m still trying to lose all the weight I gained (50lbs) and find some sort of normalcy in my life again. I feel like an alien in my body. I don’t recognize the person I see looking back. I have my ups and my downs. I am trying my best to get through it. It’s hard, but I’m here.
Women are forever dealt the shitty hand. Our hormones dictate so much of our lives and when things go array, the whole body is in red alert. It’s frustrating and exhausting. I still feel deeply misunderstood when I am battling an illness that no one can see. It’s an invisible battle, that receives little sympathy or praise for how well I’m doing. I just wake pt wake up and hope for the best.
In the end I met with so many doctors (8). They all ran so many tests and labs (30+). I also juggled an extremely toxic relationship in all of this, that did not help my health and overall mental wellbeing. To say that this has been a challenge is an understatement. I am on a path to healing my physical wellbeing and my mental wellbeing. Thanks to everyone who has been with me through it all. It truly means a lot. Life is hard. It continues to be hard, but I am taking steps that will give me the strength to get through it.
For more information on MACS
The long-term effects of MACS (subclinical Cushing’s syndrome) can impact health significantly.
