Any ideas? Symptoms

[Sworkmum]

Hi all,

Wondering if anyone has any insight into what could be going on with me.

I have recurrent mouth ulcers (very large and painful, and affect my teeth too giving me horrendous toothache) they last weeks and nothing helps the pain.

I also have recurrent UTI's around 4-5 times a year that will not clear up without rapid antibiotics.

All of these progress quickly.

Having some issues with bloating and diarrhoea at times too. And some joint pain, struggling to sleep sometimes and other times so exhausted I fall asleep at 8am! I have had on and off night sweats (to the point I wake up like I've been in the pool!).

Do have some issues with very sensitive watery/itchy eyes and have had some migraines though these seem to have eased for now. I also have raynauds.

I am driving myself mad as I go to the GP when I get one or the other. Have seen maxiofacial for ulcers (lots of mouthwashes given - no change). And went for an ultrasound a while ago for UTIs.

I feel like all of these things must be related and the more I google it sounds possibly autoimmune related. It's like my body is attacking itself and things definitely come in flare ups, then I feel better for a while, until next time.

I feel like I can't get the GPs to take me seriously and quite honestly I don't know what to do.

I have had coeliac test - all fine, lupus related tests a while ago - all fine, routine bloods - fine in nov but just been repeated again.

I am generally quite healthy, exercise, eat generally ok; average weight etc.

I also have 2 children, one of who is struggling with stomach issues on going (no answers yet) one has a diagnosis of raynauds too. I am really worried there is something 'wrong' with me, and that they too could also have it. I am also worried I am seeming like I have some kind of fabricated illness issue as I am always at the GP or something for one or the other of us, but it's definitely not made up and is driving me mad going round in circles and tests seem to all be ok so far but the symptoms persist and they are stopping me being able to function in my day to day life.

How long ago were you tested for coeliac?

Very recently like a month ago maybe.

I would push for more blood tests to check for autoimmune generally but maybe particularly for systemic sclerosis. Huge overlap with Raynauds and can cause digestive problems.
It is incredibly frustrating to not have a diagnosis, it might make little difference to treatment as most is treatment of individual symptoms, but goes a long way to making you feel ‘believed’.

How old are oyu? Many of these could be related to peri/menopause.

Thanks for the suggestions. I have just had some more routine bloods done.

I am 35 but many of these things have been going on for years, just more one at a time with them getting worse recently. Ulcers for example I have had since I was a child, but have got worse into adulthood. Same with the UTIs.

It does sound like some sort of autoimmune issue. My husband was diagnosed with crohn's in 2019. He'd had autoimmune issues for years having developed type 1 diabetes and then thyroid disease. He suffered very badly with mouth ulcers and this was eventually linked to crohns that can flare anywhere in the digestive tract. He's since had biologics and then eventually an ileostomy. The mouth ulcers cleared up eventually. I would ask for further tests.

probably highly unlikely outsiders but have your drs ruled out Lyme disease and TB? Both can cause issues if left untreated and becoming chronic.

Have they ruled out Bechets disease?( a rare type of vasculitis)
https://www.nhs.uk/conditions/behcets-disease/
Have you seen a rheumatologist?...if not ask to be referred, often vasculitis is very poorly understood by GPs and can mimic many other conditions
sadly it can often take many years before a diagnosis is made

Sjogrens maybe.
My nan was diagnosed and the mouth ulcers were the thing that the Dr looked for.

Bechets comes to mind

Could be IBD? Although these symptoms probably come under most autoimmune issues!

Do you have white lacy lines on the inside of your cheeks or any whitish patches? It could be erosive lichen planus. It also affected my bladder, lots of pain and constant pering, no uti but blood present. Hope you get an answer soon.

The optician and dentist can give you a strong indication if it's Sjogren's, which seems v likely. Water-y eyes are actually a sign of dry eyes (you're not producing the oils that adhere the water to your eyeball), so don't rule it out fur that reason.

The very best thing I ever did was paid to see a good private GP. Best £150 I ever spent. He diagnosed me and my life has never been the same since (improved)