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It’s hard knowing that the chronic pain will get worse and you don’t know when it’ll be. It reminds me of a quote from The Fault in Our Stars- “There's no way of knowing that your last good day is Your Last Good Day. At the time, it is just another good day.” However, it’s even harder when a flare makes you face that reality even more.

I believe my pain is getting worse. Flares are more often, longer lasting, more exhausting, more problematic. It’s a lot harder when I can’t really take painkillers for it.

I got diagnosed with GORD/ gastritis/ hiatal hernia. The symptoms were getting worse, and long story short I had a gastroscopy where I received those dx’s. At the time, my reaction was one of relief. Relief that my symptoms have a physical recognised cause. Because I had just gone through ENT and cardiology where they couldn’t (they could prove the symptoms but not find a cause). Now it’s still relief, but also frustration. It could have been avoided if they had arranged a follow-up appointment when I first went to the doctors about it almost 10 years ago.

Speaking of frustration, I found out that my cholesteatoma actually still appears to be of existence. I was told it was gone, but going over my medical notes it appears this wasn’t the case (besides, it has to be surgically removed to be permanently gone & it wasn’t). Where I keep losing my hearing, I tried mentioning it to the doctor but it got dismissed. Even though there’s things at stake, I’m too tired to fight and get another opinion. Not that I’d be able to anyway- the migraines have caused me to just want to shut down from everything & I only leave the house for appointments.

I’m quite tired of all of it to be honest. It’s exhausting, and being in pain I have the physical exhaustion on top of it. Not sure what else to say or where I was going with this post, but yeah. I’m back?

#ChronicPain #Pain #BackPain #Cholesteatoma #GastroesophagealRefluxDisease #HiatalHernia #Gastritis #ChronicMigraines #Migraine #exhaustion #MentalHealth

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Recovery Period

So on Sunday I had begun my self isolation, and I hated every second of it. My mental health was incredibly low, and I never got anything done as my schedule was an absolute mess.

On Thursday I had my surgery and it went well. They didn’t have to cut behind my eardrum which was brilliant and meant less stitches. I woke up in the recovery room and was in so little pain that I went back to sleep 😂

Not the case now of course! I’m in a fair bit of pain which isn’t affected by the painkillers, my ear is bleeding and the left side of my mouth is numb. Living with chronic pain though, I’m fairly unbothered and just living with it as I know it’s only temporary. Oh! I’m also pretty deaf in that ear but that was the one thing I was expecting the most.

I have a post-op appointment in 3 weeks which I’m a little nervous about. I had to have this op because I was in the 1% that had a perforation from a grommet, and then I was also in an even lower percentage for a cholesteatoma. There’s a 3% chance of this op being unsuccessful.

Though of course I’m not spending much time worrying. I’m just cautious about celebrating early about closing a 16 year chapter. And I doubt it’ll be immediately obvious yet in terms of whether the op was unsuccessful. After all, last time things looked successful and good for a year and then it wasn’t. Then it stayed stable for 4 years and then it didn’t. It’s just in the back of my mind.

#ChronicPain #Surgery #Operation #HearingLoss #tympanoplasty #ent #MentalHealth

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Soap opera life

Sometimes it feels like my life is a soap opera.

I now have a harasser/ stalker. I haven’t felt safe where I live but don’t really have anywhere else to go until tomorrow, which would then mean being in the same house as my ex boyfriend and that’ll just have a whole other impact on my mental health.

I’m hoping I am actually safe here though as my neighbours and flatmates know what the person looks like, as well as the buildings security. Been clear so far as far as I know.

In great news (understatement), my blood test results came back normal!! On the lower end of the normal range but it’s normal and that’s all that matters.

I’m still bruising and losing weight though, so I have a doctors appointment on Tuesday. I’m now below 7 stone, and I don’t remember the last time I was. Also losing hair.

ENT appointment on Monday and I’m impatiently waiting. I just want to know what kind of course of action they want to do. And also to confront them about why they never told me about the cholesteatoma.

Chronic pain has been bad unfortunately. I actually had to take painkillers. It’s a lot of sudden sharp pains and it seems to be pretty constant. It is what it is though.

#ChronicPain #ent #Stalker #Harassment #bloodtest #WeightLoss #HearingLoss #HairLoss



It sucks to be gaslit by anyone, but it’s even worse when it’s by the doctors.

A few years ago I had an ear infection and on the screen in the doctors was the phrase “cholesteatoma”. I had had a CT scan about 2 years before and this was never mentioned to me.

Afterwards, I requested them to find the letter from the CT scan results and they said they couldn’t find it. And I was mocked for asking about it.

It was then repeated verbally when the surgeon was going through risks of my jaw surgery. Processing all the other information given, I never asked what it was.

It’s something that’s always bothered me, so a few weeks ago when I switched doctors surgery, I requested access to my medical records. This was granted.

Last night I spent time trying to find the letter. And I found it. I sat there in anger, shock and disbelief for a good while. And the way they worded their disappointment when I declined the operation to fix what I knew as just a tiny perforation in my ear when they advised against having an operation.

I wonder if my hearing loss could have been avoided if they had told me. Because I wouldn’t have turned it down, had I known. I was always on the fence about it, but I trusted them when they said there wasn’t much point.

On my current referral to ENT, it’s never been mentioned. I plan on bringing it up when I see them. I just don’t understand why they hid it from me.

#Cholesteatoma #ent #ear #Gaslighting #HearingLoss #CTScan


#HearingLoss #HardOfHearing #BipolarDisorder #PTSD #BorderlinePersonalityDisorder #SocialAnxiety #Misophonia #MyCondition

Hi all. I’m new here. I suffer from Hearing loss, Bipolar Disorder, PTSD, BPD, and I have had a cholesteatoma which is a rare cyst... etc. life is scary living with lots of disorders. I always feel like I get the worst of it when I know I don’t.. being a hypochondria as well makes you wish there was something wrong with you so you could prove everyone wrong and say “hey. There was something wrong with me.” I also suffer from misophonia and misokinesia. Life is scary.. but somehow I’m still pushing through it all..

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To Many Illnesses ~So little Understanding

I cant list them all but I have 5 Chronic Illnesses. Chronic Cholesteatoma both right and left ~Chronic Otitis Media~ Chronic Achilles Tendonopothy with severe acute flair ups~ Nodules on my Thyroid ~Nodules on both lungs ~. Theres more but my Doctor can't even read blood work correctly. Since September 4th I've spent more the 50 of the 60 days in bed because my Dr. ~ Dr.Mack refuses to admit she's human and has and can make mistakes. I recently tried to get a new PCP. FIDELIS gave me a Doctor who is deceased. When explaining this to them there response was " Well she had to call and tell us she no longer wants to be part of our insurance company.! WTH ( what the heck) I also suffer from a severe hearing loss making communication very taxing. So I'm back with the Doctor who can't tell the difference from a foot and a mouth. While I'm slowly deteriorating from numerous Illnesses my Doctor gets compensated for abusing me. I'm done after this post I'm reaching out to the AMA. I'm sorry that I'm being such a downer and sound angry but the system has gone haywire.

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