Sorry for the late reply. I actually had the c-toma in my left ear, I kept on going to see ENT surgeons about my right ear - which is the one that I have had all the problems with. I know there is something wrong with the right ear as I get pain in my ear and up the side of my head and I've got the retraction there. They constantly tell me I don't get pain in my ear. The c-toma in the left was found by accident really, I had a hearing test in which they found I was quite deaf, then after he took a bit of wax out (which has been there for ages as it never came out when my ear was syringed) he found the perforation. Assured me it would be a minor op to repair eardrum but then found the c-toma which was actually quite a large one and underneath the hearing bones, there was no choice but to remove the bones. Apart from deafness there were no other symptoms. I am waiting for an MRI for both ears now which will hopefully show what exactly is wrong with my right ear. I am 52 now and had my right ear operated on when I was a teenager, back then they used plastic to repair eardrums! I think a bit of that plastic worked its way out.
No one in my family has had cholesteatoma and I've always had fluid build up since I was young and had grommets etc. It was the ENT surgeons who told me a retracted eardrum is nothing to worry about - I'm never going to take their word for anything again and will probably become a nuisance, but I know my ears and know there is definitely something wrong with my right ear. I don't know what caused the c-toma in my left ear because I always said that was my good ear. Not sure if it was wall up or down, he never said but I'll be asking next time I go.
Mine is still early days - only 5 weeks so I can't get it wet yet.
Persevere and ask for an MRI, apparently that will show anything up, I'm still waiting for mine. My Dr seems to think it will give me peace of mind, but I think it will show my worst fears, but as I said before, the surgery wasn't actually too bad and did heal well. Hope you get sorted. One last thing, do make sure you see a surgeon who is trained in otology.