Back in the latter part of 2014, I began feeling unwell and had a problem with my left ear. It wasn’t continuously painful and I would get the odd bit of tinnitus which would clear overnight, so I just thought nothing further of it.

However, during Christmas 2014 and into the New Year, my ear pain had increased daily and I decided to phone my GP surgery for a doctor’s appointment. If you have the new system at your GP surgery of ‘telephone consults’ only, then you will understand the frustration of this new system and how you never seem to get anywhere with making an actual appointment to physically ‘see’ a doctor. So I ended up speaking to a female doctor that day on the phone, who promptly told me that my ears were probably impacted with wax and that it was nothing to worry about. I did mention to her that I’ve almost never had any problems with my ears apart from the usual childhood ailments in the past, but she still mentioned hard wax. She did say that if I felt I still had a problem, I could try making a nurse’s appointment to have them looked at.

Three weeks later at the end of January 2015, I called the surgery again after I woke up one Sunday morning and my ear had popped along with my hearing was completely muffled in my left ear. I requested an appointment with a nurse to have my ears physically looked at and went along to the surgery later that week. The nurse looked into both ears and asked if I was in any major pain and I told her that I wasn’t but pointed out at the same time that I take major painkillers for my damaged lower spine every day. She inquired as to whether I had any discharge from my ears and again I said “no, nothing at all.” This nurse could not believe that I wasn’t in great pain and again I mentioned my heavy duty painkillers. She then told me that they were seriously infected particularly the left one. No surprise there, I thought!

So the nurse decided that I needed to see a doctor and she tried to arrange for this appointment. I never did see a doctor that day, I ended up speaking to him on the phone and he just prescribed ear drops and he would arrange for an appointment at our local ear clinic to see him there. It would take no more than a couple of weeks, he thought. So I duly put in the ear drops and awaited this next appointment. It was over five weeks later before this appointment came through and I was already beginning to feel that I was just being paid lip service to, so I went along to it thinking that I would just get my ears suctioned and that would be the end of it. At least I would get my excellent hearing back.

The doctor at my local ear clinic duly suctioned my left ear, and then he went very quiet. I asked him what was wrong and he told me that he thought I may have a Cholesteatoma in my ear. At this point I looked at him blankly as I had never heard of this and he immediately mentioned to me that it wasn’t cancer, so don’t worry! That was all he did say about it even when I tried to find out more about what the problem actually was. All he did was to organise a consultation at our main hospital for further investigation.

So at this point, I’m telling my husband what has happened at this latest appointment and he’s asking questions about what the problem is and I realised that I couldn’t tell him anything whatsoever as I didn’t know myself! It wasn’t until I had my first consultation at the hospital and was spoken to by a very helpful and understanding registrar that we began to realise what the hell the problem was with my ear.

I was told that my Cholesteatoma was in the external part of my ear canal just inside and that as I had never had problems before; it must have been from trauma to the ear. Now apart, from the odd ear clout when I was a kid by my Mum when I was naughty, I couldn’t think of anything that had happened to my ear and to this day, we still don’t know how it happened.

The registrar explained how they would deal with this by initially having an exploratory operation where a biopsy of the tumour would be taken and then they could decide how to proceed from there. There was also to be a CT scan to be done before the operation. This happened shortly before my holiday to France in June and so we decided to put this worry to the back of our minds and deal with it when we got home. The registrar wrote down our holiday dates to make sure that the first operation was to be done after we got home.

I had the exploratory operation on the 16th July 2015 and it was very easy for me to cope with it as I was only under for just over an hour and I went home to recover. I then had an appointment about two weeks later at the beginning of August for a check-up and for the results of the operation. The registrar had to frustratingly tell us that the results from neither the CT scan nor the biopsy were back yet so we had to return at the end of August in the hope that both results would be back in by then. So we duly returned two days after my 50th birthday to be told that the biopsy results were inconclusive due to insufficient tissue taken but the CT scan did confirm Cholesteatoma in my external ear canal with ulceration, skin and bone erosion along with the start of erosion into the mastoid bone. Because of the beginnings of erosion into the mastoid bone, we were told that the main operation to remove the tumour and complete repairs must be done within two months.

So at this point we began to realise how serious this disease really was for me due to the fact that prior to the exploratory operation, I had been unable to find any information on the internet about having a Cholesteatoma in the external ear canal. External Ear Canal Cholesteatoma is rarer than the usual type of Cholesteatoma that normally occurs in the middle ear and after hunting high and low on the web the only help I could find was via Facebook and the ‘Cholesteatoma – The Hidden Disease’ page. And thank god for this page as it has been my lifeline in dealing with this unknown disease. Even then, I found that only had around two or three others had the same External Ear Canal Cholesteatoma as me, when I asked about it.

The group has been so helpful in tips and tricks for getting through any operations as well as being a place to have a moan about it all, that to be honest, I don’t know how I would have got through the main operation and on the road to recovery as calmly as I have done.

So, on the 5th November 2015, my main operation was completed. It took nearly four hours and it involved removing the tumour, cleaning out debris, drilling out my external ear canal and two skin grafts, one of those being over my mastoid bone. The Consultant said that he was able to just put a skin graft over the mastoid bone damage and that he hoped that it would take and therefore I would not need a Mastoidectomy in the future.

I am now nearly three months into recovery and though it hasn’t been plain sailing because my energy levels have dramatically dropped and I still tire easily (but that could be to do with my age and other medical conditions), it has been easier to cope with than I thought. The pain has been minimal but then I was lucky because I take strong painkillers for my damaged lower spine anyway so I just increased the dosage of my medication during the first couple of weeks. I have however struggled to sleep on my left ear for the first two months as it was so uncomfortable and still cannot sleep on it all night. I also had a possible infection on the outer part of my ear that required Penicillin but I think that infection occurred where the Consultant took the skin for the grafts inside my ear canal.

One thing I do know is that I have been very lucky that not only did I not end up with a Cholesteatoma in the usual part of the ear and therefore I have not lost any of my hearing bones or eardrum, but also that I knew there was something wrong with my ear and that I pushed to be physically seen by someone in my GP surgery. I dread to think that if I hadn’t, how much damage would have been done to my mastoid bone alone.

So, if you feel that something is wrong and like me, you are at an age where you really do know your own body and how it feels, DO NOT be palmed off by medical staff, keep pushing until you are physically seen by someone!