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.

Cut out dairy products completely

I don't have any tonsils.
I get "tonsil" stones if I'm ill, or if I don't drink enough.
If you don't drink masses of water already, increasing that might help a tiny bit.

Yep, try your best to get a nhs referral and if you fail go and see a private GP/ consultant. This is not normal and shouldn’t be minimised. Good luck!

My GP contacted ENT and they said they would refuse the referral as they don’t remove tonsils for this problem. Maybe it’s postcode related, I don’t know, but I’ve been told categorically tonsils are not removed for this.

We’ve not gone private yet but I have a feeling we’d get the same response.

Mine went when I cut out sugar and high carbs. I don't eat flour, potatoes, rice or add sugar to anything.

I've gone from having issues every few days to once in 6 months.

My DS has this problem and he uses an irrigator kit which helps for a while

I had them for years lots of scarring from tonsillitis and they miraculously disappeared when I gave up dairy. Worth a try before you go down the surgery route.

I found eggs made the tonsil stones more frequent.

My teenager had her tonsils removed. Worked a treat.
The GP wanted to recommend mouthwashes etc but gave us a referral to an ENT anyway as my daughter wanted to see one. The ENT agreed tonsil stones are a very valid reason for a tonsillectomy.

I've had these caused by years of repeated tonsillitis. I've been referred to ENT loads of times and the consultants always said they would remove my tonsils, however the NHS funding panel refused it every time. Just to be aware that it's not always easy to get them removed and there's a long list of criteria to meet too. Worth a try though.
There's a place in london that can laser them privately, they can remove the tonsils by laser which is a much quicker recovery than normal, or they can use a laser to smooth the surface which helps stop the problem. If you Google it you should find it.
In the meantime try gargling with salt water.

I suffer with these. Invest in a water pick. It's basically a jet wash for your mouth (so it's good for teeth also). It's alot easier than rooting round at the back of your throat, just start on a low setting, I accidentally did it on a high setting once and made my throat bleed!

A water flosser/water pik but a soft stream manual one. It's a bit annoying as the electrical ones that are good for teeth flossing will massacre your tonsils but the manual one that's great for tonsil stones is useless for between teeth

It's interesting to read the different experiences on the NHS with some having treatment and some being rejected. It seems like it's very much a postcode lottery. My GP told me there was nothing that could be done (pre pandemic) so a referral isn't looking likely. Hopefully I will have more luck going private.

The relation to diet is also interesting. I very rarely consume dairy. Probably cheese once every 2 weeks and cereal with milk once per week. I don't eat loads of sugar but I'll try cutting it completely and see if this helps.

I have tried flushing them out with a rinsing kit that I bought from amazon however, there are many that are too deep for me to reach and only come out when squeezed with a cotton bud. I also rinse my mouth daily with mouthwash and use salt water a few times per week. I brush my tongue but will give the scraping a go and see if it helps.

@shrodingersvaccine I can't believe a doctor thought it was acceptable to treat you like that! You really shouldn't have to go to those lengths just to get the treatment you are entitled to.

I find it comforting knowing that I am not alone with this. I just wish there was an easier fix.

When you say you’re using mouthwash, what are you using? Try corsodyl. It’s the only thing that got rid of mine. But - it does stain your teeth if you use it continuously, but you can have the staining removed by a hygienist so it’s worth it. It’s got a specific anti bacterial agent which works like nothing else (I use it continuously twice a day for tonsil stone prevention and oral thrush prevention under the guidance of an oral specialist). I haven’t had any tonsil stones in years now.

@shrodingersvaccine

I had my tonsils removed in my twenties because of this (and repeated upper respiratory infections which would land me in hospital and signed off - one year I had FIFTY FOUR sick days it was horrendous)

However, multiple GPs told me that they don’t do tonsillectomies any more. They just would not refer me. I even had one GP who asked me how often I gave blowjobs to my boyfriend when I told him it wasn’t normal to have a constant throat infection (and I was a med student at the time I KNEW I needed my tonsils out). In retrospect I should have complained and reported him but I was 21, and just ran out away from him.

So I faked having the symptoms of throat cancer to force a referral to ENT. Showed up at the GP and said oh yes, smoke 30 a day, cough, bleeding, ear pain, can’t swallow etc etc. Yes Dr history of throat cancer in the family.

Got to ENT, genuinely barely opened my mouth and he had me referred for surgery. Surgeon came by after just to tell me he’d never seen tonsils so disgusting, that was nice. Recovery was absolutely horrific but I’ve never had a problem since.

So basically, GP will probably try to fob you off but if you can get to an ENT they’ll whip them right out for you!

That is just terrible treatment! I’m so sorry for you that you had to go through that.

OP I have had laser treatment in London on tonsils. message me if you details of who I saw.

Please don't laugh or think I'm a crank when I tell you this, but I swear mine were cured with acupuncture! I know! I had tonsillitis often many years ago, accompanied by tonsil stones. I eventually saw an acupuncturist (a really good one, she knew her stuff) and I've never had tonsillitis since and no longer have the tonsil stones. Doesn't make any sense to me, and I hesitate to tell people, but there we are.

I too had the gunk collecting at the back of my throat, though embarrassingly, I didn't realise how bad my breath was until it was all over and people told me. I cringe when thinking back. It explains whey people on my course often offered me mints! Good luck with getting it sorted - it's a nightmare!

I had the same - lobbied my GP repeatedly, who eventually gave me an NHS ENT referral to shut me up. ENT had me brushing and rinsing after all food for 3 months, which didn’t work. Still no promise of surgery, so I asked what would happen if I tried a DIY approach to cut off some of the biggest parts. That seemed to do the trick - I got “laser de-bulking” via the NHS, which was a quick day case and halved them in size. 5 years later and they’re huge and holey again - I got half a pea out of one tonsil the other day.

So I can’t exactly recommend the laser de-bulking, as it didn’t solve my problem long term. But I can recommend pushing for treatment on the NHS - it’s not a completely lost cause.

Surgery aside, I think that having my wisdom teeth out made a big difference to my tonsil stones. Not entirely sure why - maybe fewer local infections, easier cleaning and flossing. But could be a place to start.

Day to day, I syringe corsodyl into the biggest holes - doesn’t work to force out any big lumps, but I think it helps keep the holes clean and less smelly, without staining my teeth.

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.

NHS will take years to get through the backlog OP, I had this and it made my life a misery. Had a private op in the end, cost about £5k I think from memory. Well worth doing, personal loan or whatnot if you can do this

Just seen you've got insurance - mine was done though insurance and from first visit to an ENT, to actual surgery date was about 4 weeks. Was painful to get tonsils taken out as an adult, not going to lie, 2 weeks of AGONY

But the relief to no longer be paranoid about my breath was astounding

Have you tried gargling with cider vinegar?

My
Daughter had them and we tried this and it seemed
To really help

I haven’t read all the replies but a normal Colgate mouthwash which fights bacteria, swooshing twice a day, worked for me. Hope you find a solution that works for you, they suck.

I've had the same problem for a large portion of my life and I agree that they are horrendous and I don't think anyone really understands unless they have had them.

I find avoiding dairy helps and I have a tonsil stone remover tool that I got off Amazon that helps, you just have to be careful with the prodding.

With regards to having your tonsils out, I actually suffer tonsillitis a lot and have been referred to ENT several times but due to complications with my medical history I can't have them taken out and the consultants have explained each time that having them out wouldn't necessarily help with this problem as you can still get the tonsil stones afterwards as my crypts are extremely deep and tonsil tissue can grow back. I was also told that it is a really painful procedure as an adult but seeing as I never had it done I can't speak to this.

One good bit of advice I had from my consultant was to gargle with sparkling water day and night as apparently this helps hugely in removing them.