..to ask the NHS to pay for this?

[username8000]

Around a year ago I started getting tonsil stones. Started with sore throats and the feeling of something caught in my throat but progressively got worse and for the past 9 months I've more or less always got a putrid taste in my mouth 24 hrs a day, feeling of very little space to swallow or eat in my throat, weight loss due to the taste and not wanting to eat, and a huge impact on my mental health. I have went from a happy confident person to a recluse. I don't want to go anywhere that involves me speaking to people at close range as despite brushing my teeth up to ten times a day, changing my diet, rinsing with warm saline solution several times a day, I absolutely stink and there's nothing I can do to mask the smell. I have tried every single remedy possible including trying to address the root cause such as allergies, reflux etc but nothing works. I've been back and forward to my GP and been given antibiotics (didn't work), stomach tablets incase of acid reflux (didn't work and I had already tried this myself with over the counter medicine so knew it was pointless- I don't have reflux) , Antihistamines etc nothing works. My GP said they wouldn't remove my tonsils for this and scoffed at the suggestion as if this was a minor problem, which absolutely broke me. I know this isn't life threatening but it is ruining my life and affecting every aspect of it. I honestly don't know how long I can take it for. I haven't even been given a referral to a specialist but my GP insists they would remove them. I know it's a horrific recovery as an adult and there's reasons why they don't remove so often now but the alternative is just unthinkable for me- so I jus accept this as my life now? It sounds dramatic but I can't explain the depression this has given me when I have never experienced depression in my life. Can anyone offer me advice? AIBU to think that tonsil removal should at least be considered? I know people go private but I honestly can't afford it at all. Thank for reading

This is affecting your life so massively negatively, that in your position I would be doing whatever I could to get it done privately (assuming you've done the research and know that this will fix the problem). So, second jobs, third jobs, weekend jobs, evening jobs, jobs where you look after your child simultaneously, whatever. Good luck

Just bear in mind that having your tonsils removed does not stop you getting tonsil stones, which is why they may not refer you. My son who's 21 had his tonsils out a couple of years ago and still gets tonsil stones on a regular basis.

I feel for you as my youngest son has tonsil stones and the smell is horrific but removing the tonsils may not even be the answer as a lot form in the skin crypts at either side of the tonsils at the back of the mouth, so even if the tonsils were removed the stones would likely still be there. I think the answer is laser ablation , in which they laser the skin at the back of the mouth/throat smooth so that it’s not all honey and food and bacteria therefor can not get trapped and cause the smell. I’m saving up for my son to help him afford it when he’s 18, think it’s afound £1000

*not all holey not honey

I think if 4 have told you it’s a no, they aren’t just refusing.

Awful though it sounds, have you considered seeing your GP without brushing, gargling or anything to mask the smell and saying you're having trouble breathing?

If they look (and the odds are they aren't) and get hit by the smell, they might take it more seriously than somebody smelling of minty freshness.

In the meantime, I found Corsodyl to be vile but more useful than saline in the lead up to my tonsillectomy (which discovered I'd had several abscesses ignored by my old GP and there was diffuse infection still ongoing) - but I was referred to ENT because I said I was waking up choking during the night, not because I was embarrassed about bad breath. The ENT had a look, said it wasn't bad, but because of the stopping breathing, they'd refer me on for tonsillectomy (I'm too fat to be operated on at the local hospital - which is good from my point of view because I worked there and it's a bit shit).

After the initial shock, pain and being very ill during the surgery due to the untreated infection spreading, I've never felt so able to breathe - and I got an extra octave's range on my singing voice as a bonus from opening up the entire area for the first time (or penalty, depending upon your opinion of my singing voice ).

OP, Google tonsillectomy and Royal College of Surgeons- they have produced a useful doc, containing advice, decision tools and lots of other links. Take this back into GP, keep pushing, show you meet the criteria. I'd also look at the constant prescription of antibiotics to treat given global rise of resistance too. GPs should be prescribing less frequently these days. The new f/y has just started and budgets are under less pressure than there were in March.

Hi OP,
I just wanted to suggest that to help manage the condition you try cutting out dairy (make sure you get your calcium but try a non-dairy alternative like soya). If you find it impossible to cut it out just cut down. Also try cutting out nuts. Possibly look for an effect from porridge oats. Possibly look for an effect from mince beef. These suggestions are purely based on my own observations of what I have been eating when getting symptoms or not. I think they might be foods that cause inflammation (in some) or particularly likely to get stuck in crevices and calcify up. I guess you won’t see results overnight but with what you are going through it might be worth a try for 2-3 months. Keep up some salt water gargling too.
Good luck

(*soya milk)

As a previous poster said, try peroxyl, you can take it long term, I checked with my dentist, it is the only “oxygenating” mouthwash on the market, it causing oxygen bubbles when gargling which helps dislodge the stones and we find it helps with my sons stones considerably, before he started using it his breath would smell even immediately after brushing, now he gets a good few hours relief with no smell. It’s around £4.50 a bottle but Tesco often has it on offer.

Thank you everyone who has posted a reply to me. I am ever so grateful for all the good advice and suggestions being made.

Just to answers a few things PPs have asked -

My tonsils are hardly even visible, seem to be really tiny and located far back so I have never been able to see a stone lodged in my throat. I know they are there with the taste, smell and sensation and only occasionally do I cough them up. When I do managed to get them out through gargling/ gagging they vary in size from tiny ( 1 or 2 mm)to medium sized (almost a centimetre). I have tried using water picks, remover kits etc but I can't even see the tonsil properly so I have no hope. I can stick my finger to the back of my throat and feel the back of my tonsil and I know that's where they are as my fingertip absolutely stinks of them 😭

I don't seem to have a problem with them sticking in the visuals grooves of my throat so although I know tonsillectomy doesn't always stop the problem, I assume it would probably work for me as mine seem to be purely in the tonsils - I could be wrong though as I can't see anything for definite.

Post nasal drip - I do believe I have this, I'm almost certain and I haven't been given a steroid nasal spray, just saline, so I will ask for that at my next appointment.

A few people have suggested private but it's not a possibility at the moment. In a years time I would be able to possible take on more hours in which case I could start saving but I just can't imagine having to live with this for years before being able to even look at a long term solution. It might be the case though

I gargle warm salt water for at least ten minutes, 3 times a day but sometimes more - it gives me some relief of the taste on a good day but when they are really bad the taste can come back instantly. I will try the peroxyl that's been suggested. I currently also use ultradex mouthwash in addition to brushing several times a day and gargling

I've tried cutting dairy for a while to see if it helped and sugary snacks but I didn't notice a difference

I have an app in two weeks so I am going to follow the advice given on this thread by so many of you re how to approach the GP and what to say/do

Thank you again for all the replies, it means a lot. I can't speak to anyone about it in RL as it's so embarrassing so I think bottling it up makes it harder to deal with. I feel a bit lighter today having written about it and heard what you all have to say so thank you

Apologies if this has already been said but aren't GPs under obligation to refer you if you push for it (and refuse to discuss it). I say this as I went to my GP for a referral and they tried to pussyfoot around it, offered alternatives etc and then said "so we'll so that then!", very matter-of-factly. My reply was "no, we won't. I appreciate all the information and I'll consider it but I'd still like to be referred". She didn't like it but referred me anyway.

It baffles me how the GP assume they know what an ENT will advise. While removal seems the obvious solution, an actual ENT specialist may have other options at their disposal.

I'm a GP and where I work a referral for this is automatically rejected by the hospital appointments team. Doesn't even get near the specialist.

It's pretty sad how bad things have got that someone's mental and physical health can be so compromised by something and they're left with no help at all whatsoever.

It’s disgusting that they won’t refer you and that doctors are on here saying that the referral will automatically be declined. Have they never seen how bad tonsil stones can get? There has to be some way of dealing with this.

They don't care, Catching, think it's a minor problem if they haven't had it themselves. It's how it usually goes.

Personally, OP, I'd get a credit card and make busy with it.

I'm a GP and where I work a referral for this is automatically rejected by the hospital appointments team. Doesn't even get near the specialist.

@FrowningFlamingo even with all of the factors mentioned in the OP? Would there be no room for exceptions if all other possible treatments have been exhausted?

No I'm afraid not. I very much doubt it anyway. Basically any referral that mentions the word tonsil is bounced back with a checkbox form. If you can't tick the boxes you don't get an appt.
There are some robust clinical reasons for it but there's no denying it's cost-saving too, rightly or wrongly.
You can apply for individual funding but you have to prove exceptionality or rarity. Obviously it's not a rare condition. Severity doesn't count as exceptionality. There are some examples here www.england.nhs.uk/wp-content/uploads/2017/11/ifr-patient-guide.pdf

The often quoted 'psychological distress' pretty much isn't taken into account any more - or so the IFR panel tell us anyway!

@FrowningFlamingo Thank you for the info. Looks more and more likely that things are not going to get any better any time soon

"So, second jobs, third jobs, weekend jobs, "

Yes its well known that employers have no sense of smell or wont be fussy about it.

No offence OP

I had my tonsils out aged 33, I had a massive battle to get it done. I had chronic sore throats for 5 years and the only time it was relatively pain free, was when I was on antibiotics.

I paid to see a consultant and as luck would have it, my throat was badly inflamed. I exaggerated the amount of time I was having to have off work. He agreed they needed to come out, operation was nhs not private.

I've probably had one sore throat since then, my life was transformed.

@username8000 I'm afraid not, sorry...
that's only where I work of course. It does vary but it's increasingly strict in most places.
Many procedures are considered 'low value' now - not that they feel that way to the people who want/need them of course.

Have you tried cutting out wheat? My husband and I both get them, but when I had gestational diabetes and we were hardly eating any bread/pasta/cereal we both find it improved massively.

Many responses are because they think it's tonsillitis and infections.
The OP has stones which are not an infection they are calcified lumps in the tonsils. They don't cause pain or infection. This is why a GP won't refer as it isn't painful or dangerous.
Do you pop them out op?