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?

Scented toilet paper, different washing powder. A bath every day seems to help for me. Any food or drinks that don't agree?

It's worth saying that it's important to get Lichen Sclerosis ruled out / diagnosed. As left undiagnosed it can cause long term tissue damage to the vulva.

It could be I’ve checked I don’t have any of the white patchy skin, but they have also never actually tested or diagnosed it as that. But it’s what I keep coming back to

Thank you for all of your replies and I’m really sorry to hear some of you have been/are dealing with similar. To answer some questions

I’m early 30s and my hormone blood test came back as normal, periods all normal so I don’t think it’s peri

I’m going to buy some different toilet paper tomorrow as that’s one of the only things I haven’t tried changing. Although I actually feel like peeing and wiping improves symptoms sometimes (makes me think maybe it’s discharge sitting on the skin that’s causing burning as a lot of the pain is at the vagina entrance)

The clinic gave me some aqueous cream to use while showering as they said plain water is too drying but it stings during application which I’m not sure is a good sign. I’ll buy some diprobase or dermal and see if that feels better

I previously had a look at photos of various vulvar conditions to compare but aside from being a bit red there isn’t much to see on me. I will take another look at Lichen Sclerosis photos just in case

I got the copper coil about a month before these symptoms started. I’ve had problems with every other method I’ve tried including condoms so I was really hoping it wasn’t the cause of my pain, but it’s quite suspicious timing isn’t it? ☹️

Sorry op but it goes sound like it could be lichen sclerosis- I gave this too and your symptoms sound similar. Do you have any discolouring?

TAkE THE COIL OUT.

It sounds like LS.

Are you getting rubbed because you're swollen and now you're in a chicken-and-egg situation? It's not like there's any room down there. If you were a horse the swelling would be dealt with by cold hosing for 10min twice a day for a week or two. I guess you could crouch in the shower and do it. I wouldn't go knickerless for this reason. I'd get the softest ones you can and cover yourself in Vaseline after the cold treatment. See if the problem improves when you're no longer getting rubbed.

Check also are your clothes too tight? Everything rubs a bit if you're wearing the wrong size because you've put on weight, even if it all still goes on and does up. Try the next size up, if it's not too big then your current clothes are too small.

It does sound like the coil,or ls could be the culprit ,but I was going to suggest it could be any elastic in your pants, maybe around the leg holes?
Might be worth leaving them off for a couple of weeks.

If I use a certain brand toilet paper then I get an irritation. Make sure any sanitary pads or liners are unscented and toilet paper unscented and lotion free

I had similar and it was washing detergent. An extra rinse wasn’t enough, I used have to take all my underwear and bottoms after a wash and re-run them on another water only quick wash.

I would 100% take the coil out.
Make sure toilet roll is not Sented.
Only use femfresh to wash in.

Avoid fizzy and acidic drinks.

Op it isn’t the toilet paper - see my post above - its the coil

I had something similar and had all the testing still never found the reason but I'm convinced it was either toilet paper or sanitary pads that set it off.
I ended up washing down there with a wet cloth every time I'd had to use toilet roll and started wearing period pants and it disappeared as quickly as it started.

Lichen shows up as patches. Try GINA first, you can get local oestrogen over the counter now for vaginal atrophy, if you are 40 upwards…. Otherwise go private to good female gynae.

I’m another one who initially thought it’s the coil.
And your update confirms the timing is right.

Re contraception, what problems do you have with other methods ?

I feel your pain OP, as I have had a very sore vulva since January. However, it turns out that mine is thrush embedded in the skin and vaginal atrophy. Can't get rid of it. In terms of soothing it, you could buy some hydromol or epaderm and gently rub some on your vulva. It will ease the discomfort your are feeling and hopefully let you get on with daily life. However, it won't help with the cause. I use this every day, and also to wash with. Sending you solidarity ❤️

I sympathise OP. I had a spell of something extremely similar a while back and was thoroughly miserable.

I started wearing these Wuka period knickers every day (the lightest flow ones that are basically like a panty liner) and felt immediate relief. I wear them every day now and won't wear anything else as it makes me stay dry, like a panty liner without the irritation they caused.

I also wash my vulva with femfresh, and changed my toilet roll. Those 3 things combined finally healed me.

Wishing you well, it's horrible.

I have the copper coil not Mirena but if I don’t have any improvement before I go back to the clinic in two weeks I’ll be taking it out x

Unfortunately for me period pants make things more hot and sweaty down there so I get more rubbing and the burning gets worse. I have just bought different toilet roll just in case though

If I was a horse 😆. Tbh the only thing that’s really helping is cold rinses several times a day so perhaps I might have chicken-and-egg horse disease! 🙈.
I told the clinic lady that sometimes it’s too painful to wear knickers because of the heat and rubbing, but she said don’t go knickerless because they protect the vulva and hold everything in place, so everything is quite confusing at the moment

Does taking an antihistamine help? If it's an allergy it might do.

Thank you to everyone who has suggested lichen sclerosus as a possibility. I’ve looked at photos online and they are quite dramatic, the vulva has large white patches and looks smooth, the inner lips and clitoris are barely there. Is this what it looked like for those of you who have been diagnosed? Or did it start with small white patches?

I have burning but not much itching and it’s mainly (but not always) at the entrance of the vagina, my vulva looks red and feels swollen at the entrance but I don’t see any white patches or mottled areas

Slightly different suggestion from me - try medihoney barrier cream (not internally) where your skin rubs (thinking crease between thigh and vulva area) absolutely not on any part that is not 'outside'.

Oh sorry, slow typist. Ignore.