My daughter has been complaining of upper GI pain for a long time, and we finally resorted to a scope last January when she had just turned 11. The findings on her scope showed minimal inflammation in the esophagus and duodenum. No redness on visual exam.
The GI talked with us after the scope and noted that perception of pain and evidence of damage on biopsy are not always directly related. Response to pain stimulus is a very individual thing. He'd seen plenty of patients with severe damage and no reports of pain, and plenty of the opposite, too. My daughter was somewhere in the middle of this range.
Now my daughter is 11, and her descriptions of pain are immature and kind of wacky. Even when she's shown the chart scaling pain from 1-10, and the smiling/frowning/grimacing faces that go along with the numbers, she still reports her upper GI pain as a 7. While she's sitting calmly in the chair and smiling. It is very hard to get a realistic understanding of her pain from such a conflicting self-report. Her pediatric GI noted that they have a psychologist on staff who works with kids on biofeedback and other pain control approaches. We haven't yet taken any steps in that direction.
None of this comment is meant to belittle your experience of reflux pain. I only mean to tell you that while your pain is unpleasant, it isn't necessarily indicative of severe physical damage. What to do with that information is hard to say, though.
49 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (3g/day), Sulfazine (1.5 g/day), Prevacid, folic acid, vit. D (2K iu), flax seed oil (2 tsp/day), mesalamine enema as needed. Gluten free as of 5/30/11.