To ask for help with my fiery vulva?

[Ouchouchowwwww]

As the title says. Sorry but I’m desperate!

have been having a burning stinging inner labia/urethra for months. Pain worse when I need a wee but no pain upon actually weeing. No smell, no discharge, no itch,nothing external i can see. Seems to be especially triggered by sex. Pain concentrated to right side of vulva?!

i am 39. Three kids. Oldest 3. not breastfeeding or on any hormonal contraceptives. don’t use condoms. DH lucky if he gets near me thanks to the fires of hell in my knickers.

i’ve had swabs for thrush - came back showing minor growth only and have done round after round of pessary/canestan ointment/oral tablet. Also treated DH who has no symptoms. I’m on heavy duty probiotics. Tried BV treatment (negative swab) but didn’t help. Two rounds of ABx in case UTI (samples clear) but didn’t really help and doesn’t feel like a UTI really. GP stumped, he’s doing gynae referral but wait times of forever.

comes and goes - worse before my period then relieved when it arrives, then gradually returns.

it’s so sore and irritating.

asked GP if it could be early vag atrophy and she didn’t think so but can persist with this if others think it could be.

no scented sanpro or washing powder, live in joggers, cotton knickers etc. Only ever use unperfumed soap, no bubble bath or soap in vag.

Have found loads of threads on this but none ever have a resolution!

help me. I’m like that sex on fire song but in a massively unsexy way.

The only reliable way to diagnose LS is biopsy so don't rule it out now or later.

In my case it was worms

Certainly not precious about worms to those who have suggested it having had two older DC go through primary school already!! But would that be so on-off??

i am going to try the GUM clinic again. They said on phone they didn’t deal with anything dermological but maybe will just go to their walk in and demand help

I was diagnosed with lichen sclerosis last year,it wasn't itchy,it was raw, when I went to the toilet it was agony. Saw a gynae consultant last November, wasn't improving,saw a private dermatologist, she said it's eczema. It doesn't itch. I've been wearing white cotton pants, swapped PJ's for night shirts. The dermal wash burnt. Now using Dermovate steroid cream, washing with epaderm cream (you can buy it off script) using epaderm ointment for moisturizer 6 times a day, twice a week Vagifem and external estrogen cream. One day it's ok next can hardly walk!

@Nannyfannybanny that sounds awful, poor you!

Vagisil is available in the UK too - £5 a tube from Boots:

www.boots.com/vagisil-medicated-creme-30g-10007183

It does work but it fixes a symptom rather than the cause.

Make sure the loo roll doesn't have "lotion" on it

I’d definitely treat for worms too. It really won’t do any harm and it really can affect in a similar way.

@Ouchouchowwwww yes just burning (lots and lots of horrendous burning) no change in discharge. I have seen 4 gynae privately. I asked about aerobic vaginitis but none of them had heard of it.

I got a Juno swab done privately which showed me I did indeed have aerobic vaginitis. I have used fluomizin followed by vaginal probiotics. My PH has improved and recent Juno swab shows a healthy microbiome. I am 80% better, I saw a gynae in the GUM clinic today as I am still getting occasional flares and lo and behold without me bringing it up she mentions aerobic vaginitis......wish I had tried them first!

I have also found the my vagina website to be a valuable resource when the medical professionals seemed to have no clue and the killing bv support group on facebook (they are not just for BV but any vaginal dysbiosis)

another thing of note....I am also better when I have my period . The gynae I saw today said this would be when there is a drop in oestrogen, if I am feeling better when I have naturally lower oestrogen it is unlikely issues are caused by a lack of oestrogen and therefore I do not need oestrogen on prescription

Thank you all. @Eastereggglutton the juno test looks interesting bur can only see the US site - did you buy yours from there?

up with it now 😓feels quite stingy in my bladder too

Yes it us from the USA but they ship to the UK.

Could it be your urethra? The way it interacts with your bladder/hormones makes me think maybe you've got a minor prolapse, and when the urine is building up, it causes this pain?

Thanks @JustFrustrated i do feel like it’s quite a bladdery pain and located up from my vagina. Can’t see anything indicating a prolapse. Think I will find a private urologist/gynaecologist and go from there

@Ouchouchowwwww can I ask how your doing now and did you get any answers? I have similar symptoms, outside of vagina and urethra feels uncomfortable, no uti no bv or thrush on swabs I'm at a dead end but it's awful!

@Ouchouchowwwww I know you said nothing showing on swabs but have you tried treating for thrush? I suggest this because I had similar symptoms once, nothing showing up when testing and it went on for what seemed like forever. Is there any damage to the skin? Cuts/abrasions?

Sounds like it could be Vulvadynia. I get this flair up. The only thing that helps me is when it comes on to sit in warm water whilst pushing against the area for ages with a flannel. Took them 8 years to diagnose it with me.

I ended up getting six months worth of flucanozole and touch wood seems to have solved the bugger!!

@Ouchouchowwwww yay that's excellent! So glad you got it sorted. I had the same. Apologies I realise I meant to tag @Herne previously 🤦‍♀️

glad to hear you’re feeling better! Did your symptoms improve after the initial dose of fluconazole or did it take several weeks of treatment for symptoms to improve?

It definitely took a couple of weeks

Back again!! Bloody hell

You’ve not got a Mirena have you?

Could all be caused by vaginal dryness. That was my problem and it lasted a long time. All caused by blocked glands just inside the vagina. Gave up trying different things and stuck with warm soaks in the bath and eventually it resolved itself.

No mirena- no hormonal contraception or any sort @Flowersinspringgrowwild

that doesn’t seem to be an issue for me @SALWARP2023 🙈 but thank you for suggestion and glad you found something to help