I began reaching out online, speaking to others about my symptoms and what I had endured trying to get a diagnosis. A lot of people, like some of the doctors, basically just ignored what I was saying and mentioned a counsellor or therapist would be beneficial. That would really upset and confuse me, as by getting that response I knew they weren’t really listening to what I was saying.
I was talking to someone on a health website, writing about my symptoms, and out of sheer luck a lady from The United States read my post and commented saying that her mother had almost identical symptoms. We began talking further and she mentioned something called Cyclic Vomiting Syndrome, or CVS. I was intrigued but unsure, as it was almost unbelievable that no doctor between Kiama and Sydney could say what was wrong with me, yet a stranger from the United States at least had an idea.
I began researching on reputable websites about the condition and I remember the mixed emotions I felt as I was reading and realised how eerily similar it was to what I was experiencing. I sent the information I found to my mother who I believe replied with “Hey that’s a story about you!” It was then that I began to think that maybe this was the answer. I knew this wasn’t definite and had to keep an open mind, but this could at least be a step in the right direction. I made the doctor’s appointment for the next day.
The doctor I saw this day was very helpful, he listened to what I had to say as I told him what has been happening over the past few years. He then gave me something we have been trying to retrieve for a very long time, a referral to a specialist. He did this with the intention of getting me booked in for an endoscopy. I was booked in for November that year to see the specialist, Only 3 weeks from the date I got the referral.
I saw Dr. Cheung, he is a Gastroentroligist at my local day surgery, he was asking me all sorts of questions and had a look into my history. Not once did I mention the words Cyclic Vomiting Syndrome, however Dr.Cheung said to me that with my history and my symptoms, he is almost certain Cyclic Vomiting Syndrome is what I have. He mentioned an endoscopy would be a waste of time, as there are no tests that can show CVS, only tests to rule other things out, which we have already done.
He gave me some tips on how to try to manage it, although it was mainly diet based. He also mentioned that I tick all the boxes for someone prone to CVS. I have a family background of Lebanese heritage (middle eastern people are more prone), I am a female (more females are affected than males) and my mother has a history of gastro/reflux. Also having H.pylori is a sign of being prone, and can be a trigger for the syndrome to manifest.
After throwing a few questions back and forth, and after his explanation of the condition, he mentioned one other thing that I wasn’t fully aware of, there is NO cure… So what I thought would be the end of my journey, was really only the beginning… I still had a lot to learn and a long way to go.