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?

Could it be your shampoo, conditioner, washing powder/liquid or fabric conditioner? I have rather sensitive lady bits and have had some nasty irritation in the past when I've changed one or more of those things.

Two things come to mind. The first is the copper coil. I wouldn't discount it tbh.
The second is washing powder allergy.
I have known people be allergic to even unscented, non bio powder. There may be something else in it you haven't thought of.
How long have you had the coil?

How old are you? Could this be menopause related? Or lichen sclerosus?

When I had the Mirena coil the threads made me very uncomfortable, always felt a bit itchy. Didn't realise until I had it after 19 months of ensuring it.

Could it be vulvodynia?
https://www.nhs.uk/conditions/vulvodynia/

Have you changed toilet paper recently? I had something similar and it took me weeks to realise we were using a new toilet paper brand that I was allergic to.

Could it be your toilet roll? Our usual brand added a fragrance recently. It did not agree with me - I had symptoms like you are suffering from. Whatever is causing it, I hope you get some relief soon.

i smother any irritation with sudocream which helps but mine is more likely from menopause

I was about to suggest toilet roll too. They’ve added lotions and scents to a lot recently, without making it clear on the packaging. DH got some by mistake and I was raw in a couple of days. It was the same one we always used but in tiny writing they said “now with lotion” or something.

I was thinking LS

I had those symptoms and ended up paying to see a private Gynae, I was diagnosed with Lichen Sclerosis and Vulvodynia (secondary to the Lichen).

Depending on your age, could be vaginal atrophy - it’s very common in peri & menopause and very treatable with topical oestrogen

Sounds like my vaginal atrophy, estriol cream solved it.

If you aren't the right age for meno, I once caught worms from my small children and was RAW around vulva too from all the itching - two tablets and totally solved.

You need to see a dermatologist next. I had a similar, saw various GPs, GUM clinic did swabs and biopsy. Eventually referred to dermatology who correctly identified to as eczema (seb derm). Could be a number of other skin conditions though or allergy. Allergies can be "referred" so don't always show up in the place with contact. I have various allergies that cause symptoms on my hands and ferry wherever I have placed the allergen.

it could be just about anything.

any product you use can migrate to that area in the shower.

remember unscented does not mean fragrance or irritant free.

I would try switching to cloth pads and a menstrual cup. I have not found a single disposable product that does not trigger an allergic reaction .

also be very careful with toilet paper. We have a bidet at home because I try to use it as sparingly as possible. When we travel
for any decent of time I bring my preferred brand and a squeeze bottle for washing with me.

my vulva problems started about 20 years before my allergies manifested on the rest of my body. I had biopsies. The doctors tried so many different treatments. None of it worked. The only thing that finally helped was figuring out that for me it was all a series of allergic reactions. That was when it finally cleared up for good because I god rid of every single allergen in my life.

I was going to say this.
Estriol (vaginal oestrogen) will help massively if so.
YES vaginal moisturiser is also good for more regular use.

What is your diet like and do you have any risk factors for diabetes?

You mention blood tests for hormone levels, did that include HbA1C or blood glucose levels?

Frequently thrush symptoms can be indicative of high blood sugar.

Try going without knickers for a week or so

I had this, it was eczema/dermatitis (had the same tests as you too all negative) GP was originally stumped too

Washing with dermol has helped, it’s amazing stuff, a great emollient you can get from the pharmacy. I now have it on prescription

So try Dermol! And coconut oil occasionally

Could be an allergy to toilet tissue or pads/tampons when you have a period. I get terrible itching and burning using generic pads. Also wash undies in non bio and no fabric softener.

I had something similar, took about 18 months and various specialist appointments. Finally gynaecologist diagnosed mild eczema and said to use Diprobase. It fixed the problem almost straight away

I’ve not RTWT but I posted about my sore vulva under a different name on here. Burning pain, I’m only 40.

GP swore blind it wasn’t the Mirena. Was giving me oestrogen cream, had tests etc all sorts.

Turns out - it was the Mirena. Had it removed and symptoms cleared within a week.

possibly lichen planus or lichen schlerosis? Very painful/itchy and mine gets worse with sweating/heat. I get prescribed quite high strength steroid cream for it Works a treat (doesn’t cure it, but fixes it until the next flare up). Good luck with figuring it out.

I also have something similar I guess more absolutely insane itching. When I’ve been looked at the gps they said it’s like loads of small cuts. Anyway happened in 2022 still no resolution. I wear cotton knickers, wash with fragrance free super sensitive wash, the only thing that calms it is trimodine cream which I have in the fridge, I just apply it when I feel I’m flaring up and seems to sort it for a few days to a week

That also sounds like lichen sclerosus. Being treated by the steroid in the cream maybe?