Mouth ulcers ruining my life!

[Lemmings123]

Ok slightly over dramatic but does anyone else have this problem? I've suffered with these for so long and they are so painful, the only time I've ever been free of them is during pregnancy but obviously I can't get pregnant all the time. I've had all the blood tests and nothing can be done, seems like you just have to live with it!

Has anyone else suffered so badly with mouth ulcers?

Please don't say use bonjela as I will throw my phone down the toilet

Have you been checked for celiac? It might sound stupid but I used to get horrible mouth ulcers and canker sores to the point I couldn’t eat. Eventually my gp sent me for tests and it showed I have celiac. Since I’ve stopped eating that stuff I don’t get them now.

Try switching to a toothpaste without sodium lauryl sulphate. It's used in very many toothpastes yet is a known cause of mouth ulcers. My DD had them lots and they went as soon as we switched.

Have you tried zinc supplements? My daughter gets them a lot but I think she has had fewer since taking zinc.
I read that they can be related to deficiencies. Even when bloods come back "normal" it could be on the low side of normal.
You have my sympathy, my daughter gets very upset with hers. They can be very painful and gp had no suggestions.
I also changed her to sensodyne toothpaste which I read has some different ingredients. Apparently sodium lauryl sulphate is bad.

I'm a GP. I can't diagnose you over t'internet, but it is worth talking to your own GP and also getting some photos or video of the ulcers to show him/her. There are loads of possible causes, most of which are easily treated, but diagnosis can be tricky (hard to tell one cause from another) so pictures will help.

This being MN, a load of ghoulish posters will probably appear in a moment, fresh from Google, to spout a list of horrible conditions that can cause mouth ulcers. As you have had your ulcers for a long time, they are highly unlikely to be anything to worry about. But they are worth talking to your GP about.

You need to find out why you are getting them. Canker sores especially are extremely painful.
When I had them I was sent to hospital to check whether I was celiac.

Agree with the SLS free toothpaste, and also that investigating digestive issues is sensible - they can be linked to crohns and ulcerative colitis too.

When I was suffering really badly the doctor gave me a steroid cream too, which worked well to dry them out and numb them. No comparison to Bonjela!

Good luck, I hope they clear up soon

I honestly could have written your post! I have suffered with mouth ulcers since childhood and at times if I get a really bad flare up then I can't eat and barely talk as it is so painful. Like you, in pregnancy I didn't get a single one throughout any of my pregnancies. Like you said, I can't be pregnant forever so the only other think I think might help is cutting back on caffeine as I am a serious tea drinker (10-12 cups a day) whereas during pregnancy I always cut down to one or two at the most. I do need to do this but haven't yet so can't say if it helps or not but that's the only thing I thought might help. If we for you I really do, no one understands how awful mouth ulcers are unless you have had them bad, I really do sympathise x

@HareofEasttown

OK you need to get Kenalog and it's only available in NZ and Australia - find an online chemist, pay them a fortune, and they'll ship you a couple of tubes.

It's a steroid and the only thing that works.

Don't buy a steroid over the internet and treat yourself. It's illegal to import drugs in this way and, more importantly, it's potentially very dangerous.

Every time I'm stressed, I get them like clock work.
No advice - just sympathy.

(although I did dump germalene on them because they were so so painful - but you're probably not meant to do this...)

It's interesting that you were free of them during pregnancy - it's usually the other way around. This would definitely suggest that it's hormonal and definitely worth going your GP.

The other thing is hormonal contraceptives can sometimes cause mouth ulcers - are you taking the pill?

Might also be worth thinking if you did anything different during pregnancy that you don't do now...eg supplements with folic acid/other vitamins, giving up alcohol etc.

Good luck, ulcers are the worst!

Thanks all so much, @snoresnoresnorezz it really is awful isn't it. I think like you say people don't really understand how bad they are.

I have even turned to alcohol many times to numb the pain but this isn't a solution obviously!

@misslucyeyelesbarrow I have been to the GP before but they just sent me for tests and gave me some steroid mouthwash which isn't solving the problem. Is there any connection between not having them in pregnancy do you think? I've considered going on a progesterone contraceptive pill as I thought that might help in some crazy way!

@inthemane cross post sorry! I guess I had less caffeine in pregnancy but nothing too different which is why it is so puzzling!

I always had mouth ulcers, had a whole list of things I couldn't eat because I'd get really bad ones, and had been like that from a child. Then I was diagnosed as coeliac in my 20's, and had maybe one a year after that.

That's interesting, OP, because you are relatively immunosuppressed in pregnancy. Unfortunately, though, that still leaves a lot of diagnostic possibilities.

Your GP has probably ruled out some of the obvious underlying causes, like diabetes, but there are lots of other small print causes. I would contact your GP again, say that the mouthwash isn't working, and ask if you can have further investigations.

Also, keep a diary of exactly when you get the ulcers, how long they last, and whether you have any other symptoms at the same time, e.g. red eyes, rashes, joint pain

I had this as a child. Huge clusters in each cheek that sometimes bled. The doctor/dentist did naff all to help and, looking back, I don’t know why my parents didn’t push it more. Awful pain for years.

I grew out of it eventually, but can still have the odd flare up that I can usually link to artificial flavouring/colours in food.

You have my sympathies

I had this last year & had a bunch of tests - definitely coeliac, CRP, Vit D and iron at least. All were fine. GP also ruled out herpes virus - this is another cause (essentially cold sores in your mouth). For me I think they are hormonal ultimately.

Kenalog is brilliant as a PP says but sadly not available here. It’s over the counter, not a prescription drug.

I get them from eating any kind of fruit 😪 or fruit juice wahhhh

I can't help you prevent them, but have you tried using salt water like mouthwash a few times a day? It's like a miracle cure.

A teaspoon of salt to a pint of water really helps them to clear up faster.

They're awful things. I feel for you 💐

Kenalog is brilliant as a PP says but sadly not available here. It’s over the counter, not a prescription drug

I know (at least, I assumed the PP meant the topical form, available OTC in some countries, not the injectable form). But there are 2 reasons why it is risky to self-treat mouth ulcers with a steroid when you don't have a diagnosis. Firstly, you can absorb a lot of steroid from topical use in the mouth, and end up with all the possible side-effects of steroids. Secondly, steroids can make some conditions worse, and can mask serious underlying conditions.

My ex suffered badly until he started eating an egg every day for breakfast. They became a rare event. He had been investigated for all sorts, to no avail.

Feel for you op. I get them bad, no known cause and each one can take up to 2 weeks to fully heal. They will generally pop up in sucession for several weeks at a time then buggwr off for a bit.
You know its bad when a doctor gets a ruler out to measure it!
I have found that good old salt water does speed the healing process (even if it does make me gag). But i have yet to find anything reliable for easing the pain.

DH gets them a lot and spends days with his jowls stuffed with mouth ulcer pastilles which seem to help with healing and the pain. An x used to get them every time he ate cheese!

Can you keep a food diary and see if there's any connection to something in your diet?

@CharlotteRose90

Have you been checked for celiac? It might sound stupid but I used to get horrible mouth ulcers and canker sores to the point I couldn’t eat. Eventually my gp sent me for tests and it showed I have celiac. Since I’ve stopped eating that stuff I don’t get them now.

Same for me with Crohn's disease, mouth ulcers were how it was first flagged, so could be gut implication but if you've not had any obvious bowel issues all these years then probably not

Yes you are immunosuppressed in pregnancy so diseases like crohns and colitis go into remission.