"...they could have suggested cutting my arm off to relieve pain and I would’ve been good with it." Tori's turbulant journey with CVS (Cyclic Vomiting Syndrome)

Random vomiting spells have unfortunately been a regular occurrence throughout my life. I remember having episodes all the time as a kid; This just continued into my teen years, then into my adult life. I never gave these episodes much thought. I never considered myself “sick,” but I knew my body was different. It seemed like I got a cold, ear infection, or stomach bug five times as often as anyone else. I regularly struggled with breathing and random pains, but this has always been my normal.

When I was in college, my health had begun declining in a way I was not familiar with. After having COVID, my body had gotten so much more sensitive and it seemed like it was regressing. I had grown out of a lot of my childhood health issues by this time, so suddenly having them, plus new issues, was confusing and concerning, to say the least.

I got diagnosed with POTS. This was the first time I was open to the idea that my symptoms may NOT be from my anxiety. This was a huge milestone in my health journey. I began taking my other health issues seriously. I got a diagnosis plus excision for Endometriosis, got diagnosed with HSD and began physical therapy, and got re-diagnosed with Asthma and actually started using an inhaler. All of this was– and continues to be– overwhelming, but I am grateful to have diagnoses and help from my doctors.

All throughout college, I continued having my random vomiting episodes. It was usually once or twice a year, more likely in the fall/winter, and always started at night. My stomach would begin aching until it was unbearable. The nausea would come on a few hours in. Then the vomiting would go on for hours, even when there was nothing left to vomit. The highest I counted was an episode where I vomited 30 times. I would usually tough it out until morning, when urgent care opened. I would go to urgent care; they would give me a shot to make it stop, give me some Zofran, then send me home. It was the same every time. I dreaded these episodes, but I knew they were inevitable.

After I graduated college, it was like a switch was flipped. I started the year 2025 off with multiple vomiting episodes only a month or so apart. I was frustrated and exhausted, but I didn’t know what could be done. After my third episode of the year, the urgent care doctor mentioned how this was not normal and how I should go see a gastroenterologist. She also noted that they could only give me this shot so many times in a given time frame, so it cannot continue to be my treatment.

After a couple more episodes, I finally made the appointment. I met with my gastroenterologist. He was fantastic and thorough. After a couple of months of testing, he diagnosed me with CVS (Cyclic Vomiting Syndrome). This explained all of my random vomiting episodes as a kid, and seemed to explain my current episodes. It seemed a bit odd to have this condition as an adult, but it is possible. However, many people grow out of CVS.

CVS can be triggered by stress, so it made perfect sense. I had just graduated and began life in the “real world.” I was moving, starting a new job, and starting a new life with my husband. I mentally beat myself up for having so much anxiety. I felt like these horrendous CVS episodes were a result of my lack of emotional stability.

My gastroenterologist prescribed me multiple medications to stop episodes. These did not work. So he prescribed me preventative medication. This failed as well. I was continuing to have these episodes. He kept raising the doses, but it made no difference. I was still vomiting and becoming depressed. These CVS episodes were so painful and exhausting, I began thinking how I would rather not be alive than continue going through this.

December came around, and I had my final 2025 episode on Christmas Day. I was devastated. CVS was ruining my life. It ruined my first Christmas with my husband. It cost us thousands of dollars we didn’t have just to go to the ER and get no treatment or answers. I was in pain in every way.

My gastro decided to order a CT scan to see if we were missing anything. I got it on December 31st. The results came in a couple of weeks later, in January, noting a slight abnormality with my appendix. My gastroenterologist referred me to a surgeon to discuss whether this was of any concern. The surgeon decided it couldn’t be an issue, as this scan was taken weeks ago and I was not currently having symptoms. If it was appendicitis, the symptoms would have continued, and I likely would be in the hospital or dead by that meeting (according to him).

There is a diagnosis this surgeon didn’t consider, though. One that I was not even aware existed until someone reached out to me. I had been posting my story on TikTok, and I had a woman reach out to me via DM who informed me her brother had been through almost identical symptoms and episodes I had. It turned out her brother had something called “Chronic Appendicitis.” This is when the appendix has episodes of inflammation, almost “soft launching” a rupture, then settles down. So you have these crazy awful vomiting episodes, then all symptoms stop suddenly, and it is weeks or months till you feel it again. She told me he got his appendix removed, then never had another episode again.

This was the first glimmer of hope for me. This would explain the sudden increase in episodes, and how my appendix was looking on the scan. I reached back out to the surgeon, inquiring about “Chronic Appendicitis.” He brushed it off, saying it was extremely unlikely and would present differently. I was disappointed. I would just have to continue experiencing these episodes forever, I guessed.

February came along, and before I knew it, like clockwork, another episode came. This episode was intense. I held off as long as I could– a few hours– before I finally gave in and went to the ER. After several hours of sitting around with uncertainty, they completed a CT scan on me and determined I had appendicitis. I didn’t have much time to think or consider what was going on before going into surgery. I was in so much pain, they could have suggested cutting my arm off to relieve pain and I would’ve been good with it.

When I woke up from surgery, I felt immediate relief. I knew, even beyond the painkillers, that this solved the problem. My appendix was now gone, and my nausea and stomach pain were too. I was still a bit wary, as I had to wait for pathology results. And only time could tell if the episodes would continue.

About a month later, I got pathology results back, showing my appendix in the worst imaginable shape. It was covered in adhesions and was likely minutes away from rupturing. It felt incredibly validating to see this physical proof of my pain. Not only that, but I got through a month without vomiting. Then 2 months. I hit the 100-day mark. I hit the 200-day mark. Now, as I write this, it has been over 250 days since I had a vomiting episode. Getting my appendix out saved my life and my quality of life.

My gastroenterologist and I have considered this Chronic Appendicitis and have kept a close eye on symptoms since. Chronic Appendicitis is such a difficult diagnosis to determine, and I am lucky they discovered my appendix before it ruptured. My quality of life has skyrocketed since my appendectomy, and I have shared this story time and time again to spread awareness.

Sometimes your body is trying to tell you something, and it is important that you listen to it. I am so grateful for the woman who reached out to me on TikTok, for my own doctor, and for my own determination to find answers. I am also grateful I finally “gave in” and went to the hospital that day. Being “strong” isn’t always the answer. Taking care of your body is so important.

I still struggle with symptoms from my other conditions daily, but I continue to learn about and work on treating my conditions to the best of my ability. I am grateful for the health I do have and am forever grateful to be past the chronic appendicitis phase in my life.

To find out more about Tori's story, check out @torimosser on all platforms!

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Clinical definitions will never capture the full weight of living with these conditions.

But we can.

Chronically Me.