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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Has anyone else ever had this happen to them?

24 replies

Fahhgedaboutit · 22/10/2023 07:11

once every couple of months, always in the night, my bottom lip starts itching and swelling up until it’s huge, at least twice the size of normal. It lasts maybe 15 hours or so depending on how much I scratch it. Then, a day or so later, I start getting ulcers in my mouth- not just one or two, but 6 or 7, to the point where I can’t eat, can’t talk because it all hurts so much. These are usually on my inner lips.

There’s no rhyme or reason to when or why this happens, the doctors have no idea why it’s happening but have referred me to dermatology but advised that the wait list is about 2 years. I’ve got no allergies, this has been happening every couple of months for years now but when it first happened it was less frequent, it’s only in the last couple of years started to be every couple of months.

why?! Has anyone had this happen to them or anything similar?! I’ve never had lip fillers, do have botox in my forehead but that’s only for the last few months where this has been going on for years.

OP posts:
determinedtomakethiswork · 22/10/2023 07:24

It sounds like an allergic reaction to something. Can you think of anything you've put on your mouth or face or anything you've eaten?

themidimit · 22/10/2023 07:24

Yes. Happens to me. Have had it about 10 years. Usually my mouth but sometimes forehead, hand. Angiodemia. I was reviewed by a consultant and said it's just something your body does. I am given steroids to keep in house and use these when I get a flair up. Can have some weeks where I get it regularly and then go for a year or two with nothing. I think it's linked to stress. I am pretty good at self managing it with steroids. The only issue is the embarrassment when it happens as I look like a gargoyle!

HazardLights · 22/10/2023 07:25

Not taking antibiotics by any chance?

Original poster
Fahhgedaboutit · 22/10/2023 07:55

Oh @themidimit , thank you I’ll mention that to the doctors.

@HazardLights I am actually- I’ve been taking them for years for a health condition, a monthly course of antibiotics but one of 3 which changes every month. Would that affect it?

OP posts:
Essenceofpetunia · 22/10/2023 08:06

I was going to say angiodema too. I had this some years ago. Sometimes it was lips, sometimes eyes/hands/feet, and I was also given steroids to control it. In my case it happened on and off for about two years and then just stopped and hasn’t happened since. The only time it really worried me was when my tongue swelled up in the middle of the night 😯 Other than that it was just uncomfortable/embarrassing!

DustyLee123 · 22/10/2023 08:07

Allergy or cold sore. Have you tried taking an antihistamine when it happens ?

User767463 · 22/10/2023 08:11

Swollen lower lip could be related to Crohns Disease or Ulcerative Colitis. Unsure whether the illness or the treatment. Any background of autoimmune problems?

Original poster
Fahhgedaboutit · 22/10/2023 08:16

Oh sorry @determinedtomakethiswork no allergies and there’s no logic to when it happens. Yesterday I ate a tuna sandwich which I’ve had a million times before and I made paratha for dinner which again, I’ve had a million times before. Same with last time, I ate and drank completely different things and it still happens

OP posts:
Original poster
Fahhgedaboutit · 22/10/2023 08:18

Yes @User767463 i have colitis. I’ve had a total colectomy and have a j pouch now so it could well be that, although no doctor has ever mentioned it could be related to that which is slightly irritating. Now I’m worried it was chrones all along and not colitis..

OP posts:
Original poster
Fahhgedaboutit · 22/10/2023 08:19

@Essenceofpetunia i’d be terrified if my tongue started swelling, luckily(?) mine’s just been lips! It’s not the lip swelling that bothers me so much, it’s the week of mouth ulcers that’s the pain, literally and figuratively.

OP posts:
Addictedtohotbaths · 22/10/2023 08:20

Could it be gluten / celiac? I get mouth ulcers if I accidentally eat some.

Original poster
Fahhgedaboutit · 22/10/2023 08:24

@Addictedtohotbaths i don’t think so although my surgeon suggested going gluten free for a bit which I tried but didn’t notice a difference. It’s that it always happens in the night too, long after I’d eaten- would an allergy take that long to kick in?

OP posts:
Addictedtohotbaths · 22/10/2023 08:29

I don’t get the ulcers as soon as I eat it, I think it’s once my gut had become irritated.
also look up mast cell activation disorder, that is allergy like but what triggers you can vary from one week to another.

Addictedtohotbaths · 22/10/2023 08:29

Also common for mast cell attack to kick off early hours of the morning

Mamai90 · 22/10/2023 08:33

It sounds like the way mine went when I suddenly became allergic to toothpaste. Blistered and swollen bottom lip because that's where I was spitting the tooth paste out. Although if yours is only flaring up every few weeks it's likely not that unless you're changing toothpaste brands?

I can only use Tom's of Maine now.

itsgettingweird · 22/10/2023 08:35

Notcookie · 22/10/2023 08:24

I was was going to suggest that.

Someone I know had the same thing and this was what she was diagnosed with.

Original poster
Fahhgedaboutit · 22/10/2023 08:38

Thank you, I’ve got a couple of things I can mention to the doctor next time. If it’s to do with my colitis/antibiotics, I’m on a waiting list to have my ileostomy back so hopefully won’t need any medication at all following that (I can’t WAIT!!), so the surgery might sort that.

it’s so hard to know what to go to the gp for these days- I’ve been 3 times for this and they’ve given me medication that helps the ulcers (hydrocortisone buccal tablets for anyone else that gets ulcers, they’re like magic), but I want to get to the cause of why it’s happening.

OP posts:
Tilllly · 22/10/2023 08:41

Is it worth mentioning to your dentist?

dothehokeycokey · 22/10/2023 08:57

And this is why I love mumsnet Grin

It is a wealth of knowledge and ideas and such a lovely place to be when people are positive and helpful

This is the mumsnet of old.

Op just also wanted to say I have an auto immune disease called graves which basically throttled my thyroid resulting in surgery years ago

On occasion I have had similar to what your experiencing but only a handful
Of times and it's been a lip followed by ulcers etc.

A skin person I saw said it's linked to the immune system and can be random

LittleEsme · 22/10/2023 09:10

I'm saving this thread as my teenage daughter has this - lip swell followed by mouth ulcers.

Sorry for not helping OP. I hope you get some answers.Flowers

Original poster
Fahhgedaboutit · 22/10/2023 09:29

I know @dothehokeycokey it really is such a fountain of knowledge and people genuinely want to help. I’ve had more off here than I have in 3 visits to the doctor lol.

@LittleEsme oh I hope your dd gets hers sorted soon, it really is awful not being able to eat or drink or talk properly. How long has she had it for?

OP posts:
LittleEsme · 22/10/2023 09:34

@Fahhgedaboutit it's happened about 7 times in the last 18 months or so. Your post has made me realise that there could be something more to it. Thanks for starting this thread OP Flowers

Broop · 22/10/2023 09:52

Tilllly · 22/10/2023 08:41

Is it worth mentioning to your dentist?

I agree your dentist may have alternative ideas! Could you be allergic to your toothpaste?

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