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?

I don't mean you have a horse disease! 😂 I meant the chicken-and-egg situation of which comes first, the chicken or the egg? It's an unanswerable question. So maybe there's nothing wrong with you at this point but you're swollen, so you're getting rubbed because there's no room really for the swelling to exist in, then the rubbing creates more swelling and the cycle continues endlessly.

If you can take the swelling down with cold treatment you might start to heal. Honestly I'd try it, I wasn't joking. Cold hosing is the standard treatment for swelling in a horse regardless of the cause. It's usually their legs and the cause is infection, tendon strain or bruising. I don't see why it wouldn't work on a human or a different area though. What have you got to lose?

Hi everyone, so I thought it definitely wasn’t LS but I’ve now found some white patches. Really appreciate the suggestion as I wouldn’t have checked again if it weren’t for the comments here.

I’ve started a new thread with photos (NCed but outing myself as I’ve had no replies yet). I know it’s graphic as they’re vulva photos but if anyone who has LS could take a look I would really really appreciate it before I suggest LS to the clinic https://www.mumsnet.com/talk/womens_health/5156872-does-this-look-like-lichen-sclerosus

100% sounds like lichens sclerosis

I had a look at the photos and can see the white patches. I have it OP, it's a curse but definitely manageable, so many women have it and don't know.

I was going to ask - do you get small ‘paper cuts’ like this poster? If so then the diagnosis I got was that I simply have sensitive vulvar skin and the cuts happen as a reaction to sweat. The only solution is to keep rinsing with water (e.g. after you’ve been to the toilet, dab with toilet roll moistened with water), shower immediately after any exercise etc, and use a dab of thrush cream to clear the paper cuts. It works!

Thank you so much for looking ❤️. I’m sad it will be a long term problem but hopefully soon I can start the steroid treatment and slow the progression. Can I ask if you were diagnosed by your GP, a clinic or a dermatologist?

I had this!
Try putting sudo cream on or an itch relief cream. I had the same once and it turned out to be dermatitis (I don’t know if that’s spelt right). I got some itch relief creams and tried them all until one helped and eventually it cleared up. I never had it again and no idea what caused it but I had all the same tests done and all were negative too! Mine took about 7 weeks and it’s hell. Hope you’re ok

I have found that rinsing often with cold water does help but haven’t noticed any paper cuts. I do have an area that looks like cuts but they’ve been there for ages and don’t hurt, no cuts in the sore areas

Everything about your posts says thrush to me, esp. the recent coil insertion. A negative swab doesn't mean it definitely isn't. It can take months to go and the pessaries don't always work, nor are the symptoms always the same. Coil can definitely make it worse and more persistent. Don't assume it's LS until you are diagnosed. Good luck. I don't take bubble baths or wear tight jeans or leggings for long periods any more 😭

@Justwanttosleep2 that’s what I got told that my skin is just super sensitive. It’s just a pain that I can’t get it to stop. I might check for white patches as I’ve never really checked before

Just an update as the only person I’ve told about this IRL is my boyfriend and his vulva knowledge isn’t great!

I had another appointment scheduled at the GUM clinic so mentioned LS. The doctor said it’s not something they can diagnose in one appointment, she could see the white patches but said my skin isn’t the texture of cigarette paper, it doesn’t break down when touched and I don’t have much itching. She said the area looks well hydrated (they gave me aqueous cream at the last appt). So she said she doesn’t think it’s LS but no suggestion of what the white patches are or what my diagnosis might be.

I tried a small walk yesterday and had to rip my (comfy cotton, flat seamed, double rinsed) pants off in the middle of a field with my bf standing guard as I just couldn’t stand the extra heat/soreness from walking. No closer to an answer currently and if I don’t laugh about it I’ll cry ☹️

It is the strings of the coil that can harbour infection.

That's odd what they said at the clinic about LS. My Gynae diagnosed it straight away, she saw pale patches and I described pain - that was all that was needed. Skin does not need to be breaking or itching (I had no itch just soreness). Do you have a couple of hundred pounds? I would get a private consultation.

I agree that the skin doesn’t have to be as described by the staff at the Gum clinic. Join this forum and you’ll see how LS can vary from person to person and how hopelessly difficult getting a diagnosis can be in the UK

That’s what I thought, there must be a starting point before texture changes and some ladies on here have said they weren’t itchy. Yeh I’m actually thinking of taking some money out of my boiler/home emergency fund to see a private dermatologist.

The clinic doctor gave me a leaflet about having sex with vulva pain and in there it says LS isn’t always itchy. She also mentioned psychosexual therapy, which is weird because I didn’t say anything about sex, and my vulva is obviously white/red/abnormal looking so I feel like she’s kind of skipping past the step of giving a diagnosis

So basically she thinks it's in your head even though there's obviously something wrong? Unreal.

I'd definitely try and get a private appointment if you can afford it OP, and I'd also be having the coil out as the strings harbour infection (just incase you have thrush fueling the fire)

I was sore and repeatedly tested negative for everything. GP shrugged and said refer to gynaecologist, maybe some sort of psoriasis, maybe psychological, bla bla.

In the end I got a stronger antibiotic (fosfomycin), plus a thrush pessary and the thrush pill you swallow, plus a 7 day course of Balance Activ gel. One of them worked, I don’t know which.

So basically the negative tests mean bugger all, you need to self medicate based on symptoms. And sometimes you need a few doses or a different type of medicine. Have you had the oral thrush pill or just pessaries?

Look up lichen sclerosis. It's not pleasant but regular use of steroid cream does help.

I took myself to the sexual health clinic and asked to be checked for LS last April. No, definitely not said the GP on duty and diagnosed BV. Took myself back in December and said it seemed I'd got BV again. The nurse took one look and got the consultant. It was LS and had been the previous time I went. I'm cross as I lost more architecture in that time but it shows you it's not easy to diagnose.

I would
Try hydromol ointment to wash with (it's really soothing and never irritates me)
Get the coil out just in case
Antihistamines daily for any itchy/swelling
Private derm

I’m sorry your gp fobbed you off and glad you found something that worked even if you’re not sure what it was. I’m allergic to the oral pill but have done everything offered or that I can buy otc. So far it’s been 14 days clotrimazole, 3 days clindamycin, 14 days nystatin, 5 days BV gel, 1 boric acid suppository (burned so badly I couldn’t continue) and Gynebal prebiotic/probiotic gel. After all that and 3 rounds of negative tests I’m pretty sure it’s not an infection unless it’s something very obscure

Ask the GP for prescription for Betnovate ointment. An absolute life saver.
I had similar symptoms to you. Localized dermatitis but numerous doctors kept saying it's thrush. But it wasn't.

I only needed tiny amounts of the steroid ointment but it calmed it straightaway.

This is the hydromol stuff. I did a long cycling challenge and with the exercise/sweat/dry skin, the er, top of my bum basically split
It was incredibly painful and I slathered this on in the shower to wash with and after as a moisturiser
Never stung even on raw skin

amzn.eu/d/fVBalnH

I have this with scented toilet roll. Could this be the cause?

I wonder if it's vaginal atrophy as well. PP have suggested it's caused by peri menopause but I'm 36 and not peri menopausal and had it. It has other causes and many of the symptoms match what you describe. I remember ripping my pyjamas off in the middle of the night after the pain and discomfort woke me up. GP prescribed a moisturiser (which can apparently be bought over the counter too) and estradiol pessaries, both of which seem to work.