Absolutely, it is an extremely frustrating process. The medical world are generally brilliant - though when it comes to something rare or different diagnosis takes far too long in my opinion and this needs to change.

You are being a good advocate for yourself and are doing the right thing by getting involved in forums such as this. Google is also helpful as you can stumble on people with similar symptoms to you. Where it can give you an insight as to what you may have.

As I mentioned previously I would investigate your IBS diagnosis further, unless they have categorically stated it is that. That may get the ball rolling as I thought I had IBS when in fact i have IBD. The Dr was lazy at the time and assumed that because of my age I was too young.

I really hope you get some answers soon, all the best.