It’s Cholesteatoma awareness month !

I started suffering with Cholesteatoma in both ears in 2018, and have been through so many ups and down, scary surgeries and hearing loss. It’s been a terrifying journey, at times I thought I would not ever be able to hear ever again, at times sitting in mri scans and ct scans, I honestly thought I was going to die from this. It all happened during covid so I was not allowed anyone to come to the hospital with me for my surgeries. It was such a scary time.

Cholesteatoma’s are a silent disease. They often form without any pain or symptoms, and you only know there’s a problem when it’s too late; when gross drainage comes out of your ears leaving you thinking what is this, when painful infections happen every 2-3 weeks, once you notice your hearing is getting worse and worse everyday. Then you know something is wrong. Even doctor could not diagnose it and left me for 3 years with stupid ear drops, which made things worse. I am grateful for the ENT doctor who finally made sense of it all and diagnosed me in 2020 and set the ball rolling to remove them.

There defo needs to be more awareness of this life threatening disease, before it’s too late.

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WintaTheAngle · 41-45, M

I’m sorry you have to deal with this. I’ve always found just a hearing infection maddeningly uncomfortable. I used to stumble from one straight into another as a child, the legacy of this is I find pressurised cabins on aircraft more painful than most. So just from that element alone I sympathise with you.

I hope over time things improve and you can get some normalcy back.

GLITTER · 36-40, F

@WintaTheAngle oh no you poor thing! What caused your infections when you were younger? Thank you for the well wishes 😊 hearing still not there and probably will never be, but I’m learning to live with it

WintaTheAngle · 41-45, M

@GLITTER It might have been swimming in rivers I think that started it. Then maybe over use of headphones. I’m all god now though. Hope you will be too.