Tonsil stones ruining my confidence

[Lemonandadropofhoney]

This will probably be moved to the general health board but I'm shamelessly posting for traffic.

Fellow tonsil stone sufferers, please tell me you have found a magical cure?

I have been plagued by these since my late teens. I have very deep crevasses in my tonsils that collect these disgusting lumps and absolutely nothing I do helps! Gp recommended I use corsodyl mouthwash and that's all they could suggest.

I have to clean my tonsils every other day using a cotton bud. My breath smells like rotten flesh on a daily basis and absolutely nothing takes it away. I brush, floss, use mouthwash and use interdental brushes twice daily. I have been thankful for mask wearing as I'm always extremely self conscious when speaking with people incase they catch a whiff of my rotten mouth. I won't kiss DH because I don't want to subject him to the unpleasantries in my mouth.

As mask wearing is slowly easing off, my anxiety is going through the roof! Please share your mumsnet wisdom and help me rid myself of these for good.

I had my tonsils removed for this. The ENT specialist decided on my first visit that they needed to be removed. I didn’t have to try to persuade them or anything.

I had them but since being mostly vegan and eating much healthier in general I rarely get them. I've only just made the connection.

@Lifeisforalimitedperiodonly

OP! My daughter could have written your post! What has completely solved it for her are dental probiotics. She takes them every day and then uses this mouthwash called Fresh Breath Oral Rinse.

We get her Probiotics from Lucky Vitamin in the US because she is vegan/dairy intolerant. I order several months at a time although the postage costs aren't too bad. She takes regular probiotics too as well as the dental ones.

I have a fully sealed pack of some that I bought that she can't use as they have a small amount of dairy (they are vegetarian friendly). If you would like them to try then PM me and I will send them along.

Which probiotics are they?

I had my tonsils removed privately as an adult, it cost about £200 for the initial appointment then £2.6k for the op. It makes such a difference, I'm so glad I had it done. The recovery is painful, but manageable.

I had my tonsils removed aged 15 after years of tonsillitis and ENT problems. After surgery, two whacking great stones formed, they were each the size of a chunk of cauliflower and they came out of the holes left by my tonsils. I think they'd been there very deep for years causing me agony. I remember scooping them out with a spoon. It was awful, the smell was terrible. The tonsillectomy absolutely worked though. It never ever came back. I would vote to go on the NHS waiting list if you can hang on or cannot afford it privately, it's absolutely affecting your life and relationship. Good luck to you. No amount of mouth wash will fix it. Typical bloody GP.

@ihaveonecat the ones she takes are Hyperbiotics pro-dental. We can get a lot of Hyperbiotics here in the UK but I can't find these so I order them from Lucky Vitamin. They are dairy free.
The ones I offered @lemonandadropofhoney are Life Extension Florassist Oral Hygiene. They are vegetarian. I don't know how good those ones are, of course.

I had my tonsils removed at the end of primary school, as I was missing so much school time w tonsillitis - it just came back again and again and again, w shorter and shorter gaps. Op solved the illness and school problem, but I was left w terrible crypts and what I now know were tonsil stones, and ended up having a second op to 'remove them again'. This was decades ago though.

I think the advice to get to an ENT is good, and then you can see what they say. I don't think the GP should be the gatekeeper on this.

If you have private health care just get your doctor to do a referral letter to a private ent surgeon and send it through to your insurance company - recovery as an adult is brutal but will be worth it x

I had my tonsils removed.

This is really not a healthy way to live.

I know doctors say it won't necessarily help but... In my anecdotal and personal experience it usually does.

I agree with previous posters who say a low carb / low sugar diet helps. I’ve definitely noticed that. Also drinking lots of water has helped me and regular exercise. I rarely get them these days - and if I do it’s because I’ve had a few days of eating sugary things etc. It’s weird.

I find that avoiding highly processed white foods eg white bread, crumpets, scones etc stopped my tonsil stones in their tracts. If I eat white bread they come back immediately. so for me, identifying the cause and avoiding it works.
Try excluding some food groups and see if there is a noticable reduction. You might be surprised.
You have my sympathy they are awful things.

I have found a magic cure!! You want to rinse them out with a syringe of water. I’ve got rid of all mine 😃 then you want to scrub your tongue with a toothbrush (as far back as you can without retching) after each toothbrush, then gargle water and spit, twice a day. That’ll stop the build up of calcium and debris creating new ones.

Go to Amazon, search “tonsil stone syringe” and have a browse.

Some come with torch on the end but Inprefer to use my iphone torch, much brighter. This is to help you angle the syringe into all the different crevices where stuff can hide.

(Your GP suggesting mouthwash is useless, they don’t know what they’re talking about.)

Good luck! xx

It's the CCG that decides NHS funding (I think there's still CCGs anyway) - Google your area + CCG + tonsillectomy then look at their policy, it's usually for a number of episodes of tonsillitis or quinsy. I looked at a few and none will fund for tonsil stones, either specifically stating this or not having it in the criteria, but this may vary by area.

I've got a lovely deep pocket on one tonsil that likes to grow stones. The only thing that has worked is a waterpik.
Whenever I feel like there might be one I blast it with the waterpik. I've not had any now for around 2 months. I tend to get them when I'm run down.

Pay to have the bloody things out.

Bollocks the NHS saying it won’t help. I had rancid tonsils as a teenager. Had them out and have never had any issues (or sore throats!) since. Improved my life immeasurably

@Thewindwhispers

I have found a magic cure!! You want to rinse them out with a syringe of water. I’ve got rid of all mine 😃 then you want to scrub your tongue with a toothbrush (as far back as you can without retching) after each toothbrush, then gargle water and spit, twice a day. That’ll stop the build up of calcium and debris creating new ones.

Go to Amazon, search “tonsil stone syringe” and have a browse.

Some come with torch on the end but Inprefer to use my iphone torch, much brighter. This is to help you angle the syringe into all the different crevices where stuff can hide.

(Your GP suggesting mouthwash is useless, they don’t know what they’re talking about.)

Good luck! xx

None of that has worked here …… it may be a magic cure for you, but not us sadly.

“ Pay to have the bloody things out.

Bollocks the NHS saying it won’t help. I had rancid tonsils as a teenager. Had them out and have never had any issues (or sore throats!) since. Improved my life immeasurably”

Well, exactly. A tonsillectomy is curative, except in rare circumstances where tonsil tissue grows back. GP’s saying the NHS “can’t” take them out is bullshit. They can. Guidance is exactly that and doesn’t have to be followed to the letter. All many of these posters need is a GP that can see further than the end of their nose, and a sympathetic ENT consultant.

corsodyl is a medicated mouthwash and you really shouldn't be using it long term! I use "the breath co" mouthwash and it gets rid of the worst of them. I tried CB12 and it certainly freshened the mouth, but didn't seem to reduce the stones. I do also have a tongue scraper.

Added tonsil removal to my long list of "things I'm slowly saving up for". I think its like 2000 the last I checked? something awful like that? I doubt the NHS will take them, they took years to remove my sisters as an adult and she had been having repeat infections.