So miserable with sore vulva - could this be heat intolerance/sweat allergy??

[Shan5474]

Basically for about 4 months I’ve had soreness, stinging/burning, swelling, redness and occasionally itching on my vulva. No pain or unusual bleeding inside. It started on and off but has now been almost every day for 6 weeks.

The only thing that definitely makes it worse is heat and/or sweating but it seems quite random. It’s at the point where I’ve given up my favourite hobbies of walking and weightlifting and don’t want to go out much as I know just moving about will cause rubbing and more soreness. But even though it’s not boiling weather I can’t avoid getting hot.

I will bullet point the answers to the main questions below. Trying really hard to get the bottom of it but I’m soo miserable being so sore every day ☹️

• All swabs have been negative, I’ve had at least two swabs for: gonorrhea, chlamydia, trichonomiasis, BV (flora all normal), thrush
• I’ve had swabs inspected by microscope and sent off but no thrush
• My discharge looks normal and not lumpy/smelly or a weird colour
• I’ve also had hormone tests during the time of having symptoms and they came back normal. My periods are regular and not getting shorter or lighter
• GP said it looked like thrush and gave me 14 pessaries but no improvement
• STI/GUM clinic also stumped despite two appointments (but they are very nice and keen to work it out)
• I wash my vulva with just water now. I use unscented Ecover with an extra rinse on cotton underwear
• I’ve tried changing shower gel, changing period product brands
• Often I have a cold shower, dry off, sleep with no underwear under just a cotton top sheet and wake up in the morning more sore than when I went to sleep.
• I have a copper coil. Four doctors/nurses have assured me if it was an allergy I would have uterus pain and/or a rash/itching on my body and not just vulva symptoms

I went out today and bought some hydrocortisone cream but I don’t think it’s good to use this for very long. I’m just at my wit’s end, I walked home from the bus stop and wanted to put an ice cube in my pants ☹️☹️. Has anyone had vulva heat intolerance or can give any advice?

OP what exactly are you allergic to in the oral pill? Is there an alternative? I had loads of pessaries which didn’t work, one type of oral pill didn’t work, but the second one did because it was a different medication.

Sorry I’m on my phone and can’t work out how to reply individually but thank you for the suggestions of products and things to try xx
I’m using aqueous cream but it burns a bit which probably isn’t good so will hydromol.

The clinic hasn’t mentioned trying a steroid, I suppose because there’s still no diagnosis. I’ve been using hydrocortisone for a few days but no improvement yet

No scented toilet paper but I’m trying a different brand just in case. Hormone blood test all normal so don’t think low oestrogen

I’m allergic to Fluconazole and the GP and clinic aren’t sure whether that means I’d be allergic to other azoles. That’s when they gave me nystatin suppositories but because they still haven’t found thrush on a test and I’ve had 28 days of thrush treatment they are saying probably not thrush which I think I agree with at this point (also because the pain is quite localised to a few areas not all over the vulva)

The clinic hasn’t mentioned trying a steroid, I suppose because there’s still no diagnosis. I’ve been using hydrocortisone for a few days but no improvement yet

LS Is treated with a steroid cream but it’s very strong and only available on prescription. In fact where I live in the Middle East it can only be prescribed by a consultant dermatologist or gynaecologist. It’s called Clobestasol - Clob for short and it’s not something you apply every day.

I have LS, presented as tiny cuts, soreness and itching, and redness. I can’t really see any white patches at all, though my GP said she could see some small areas where the skin was thinner.

I had this years and years ago (ie in childhood and teens). It turned out to be eczema and dermatitis. Also got told I had dozens of tiny cuts/fissures. I had fusion/adhesions when I was smaller, that separated around about 13-14. I had most of my inner lips and the skin around my clitoris removed when I was 20, difference was incredible - I used to be so sore I would almost consider covering my bits in clingfilm it stung so much, quite often ended up in tears when I was out shopping etc. Was done on the NHS, I don’t know if they’d be so quick to do it now (was 2011) but it did help, even though it was a bit drastic (and bloody painful).

The Betnovate is a stronger steroid than over the counter. I developed patches of localized eczema out of the blue. But it flared up before period and if I drank white wine! It all disappeared after menopause. When untreated it sort of 'spread' and the lips became swollen and red or lumpy. Sometimes flaking, sometimes not just itching and burning.
But once I started using the Betnovate the areas became much less inflamed and confined to just small patches.
I had the same tube of Betnovate ointment for more than 10 years! I still have it. I know everyone says oh gosh steroid creams but really you are using tiny amounts on the tip of you finger when you sense the tingle starting. You are rubbing it in well, not slathering it on like moisturiser.

Try trimovate cream or lotriderm cream

It was trimovate that eventually killed this for me

Have you still got the copper coil in? I would definitely have it taken out just to rule it out if nothing else. You can always have another out in a few months down the line if no improvement. The timing sounds very suspicious

Amphotericin or Ibrexafungerp could help. They’re the alternative to azoles. The lack of positive tests doesn’t rule out thrush. I’ve had thrush that repeatedly hid from tests but responded to treatment.

Definitely try 7 days of the Balance Activ gel though.