Extremely sore vulva sorry TMI

[Madamlulu]

Hi sorry this is a tmi topic but I feel I don’t know where to turn.

ive been suffering from an extremely sort vulva/labia/urethra (wee hole if that’s what it’s called?) for 3.5 months and its getting worse and worse.

I think it had been getting drier for quite some time with like a callus area on the tip (near where the wee hole is) it would sometimes itch but not terribly) I put this down to approaching menopause (I’m 47) and hadn’t done anything about it.

Then I went away with my family to an air b&b in March and used a perfume soap down there in the shower and it became inflamed and painful.

I then stopped using soap altogether (read on here that was a good idea even though I’d always used a simple soap at home) and have since only washed with warm water in that area.

it got worse and kept waking me up at night.
I then bought an over the counter cream called Vagisil which seemed to offer some relief but no cure and I was having to put it on a number of times during the day and waking up at night scratching (sorry!) and quite distressed and had to put it on to try to cool it down.

I then thought I need to get to the route of this problem and had an online consultation with Louise Newson’s team and she prescribed me with Ovisten cream and a oestrogen pessary, I felt relieved to hear that this is common and treatable but after 2 weeks of using this religiously it got worse not better!

in my panic I read on here and started also putting sudocrem on it, it’s now red raw with the skin off it and I’m not sure if the sud-crem has burned it or whether to continue with the Ovestin.

tbh now im using a concoction of the creams each day - ovestin, sudocrem & vagisil I haven’t got a bloody clue which is helping and which is making it worst and I’m stressed to hell! I know this sounds dramatic but I literally feel like it’s hard to walk! It hurts even to wear cotton pants! I sometimes get a shooting itch and sometimes pure soreness and pain.

I forgot to say I also recently in the last days thought I would rule out thrush (which I don’t think it is) so took a thrush tablet.

I know it seems like I’ve gone completely OtT with the creams but this has been a quest in desperation and it’s like now I don’t know how to get out of it.

any advice on what to do or where to seek help would be greatly appreciated. I can’t talk to anyone about it I’m so embarrassed and my hubby just nods sympathetically but feels helpless.

thanks so much in advance xx

I had similar symptoms to you. GP thought it was dryness associated with menopause so suggested vagisil. The itching got worse. Eventually got appt with women's health nurse and she diagnosed cyclical thrush. Six months of treatment later and it's gone and stayed gone for two years. The dryness creams contain glycerine which makes thrush so much worse.

I'd recommend trying for an appointment with a women's health nurse.

It is definitely urgent as u have tried all the over the counter stuff!

Whilst you're waiting for your medical appointments, I'd advise boil washing your knickers with non bio powder (soap flakes are the least reactive detergent and it washes out really well), then tumble dry the living hell out of them. Or iron the gusset if you don't have a tumbler.

If you have any kind of infection/fungal thing going on in the background a normal wash won't kill it off, and you'll reinfect yourself with each knicker change.

(Had thrush for 9 months after my first kid, 6m with the second, then 6m with peri menopause)

Thanks again so much for all the advice last night ladies. I went to the GP today and he said he is sure I’ve been misdiagnosed with Vaginal Atrophy and thinks it’s Lichen sclerosis. He wants me to be seen by a specialist and has referred me as said it looks severe. I’m just SO pleased I went to the GP.. it’s so stupid that I assumed I had been diagnosed correctly and so just kept plodding on - I honestly wouldn’t have even gone to the GP today if I had not been on this forum last night and so many of you told me to do so!!!

thank you so much! xx

Well done you for being brave, you are now well on the way to it getting better.

So pleased to hear you’re going to get helped now. It’s bloody miserable having all that irritation and stinging and not knowing where to turn. Ovestin sorted mine. I’ve been lucky x

So pleased you have a proper diagnosis & now it can be properly treated xx

I’m sorry to heat you’ve been diagnosed with LS but you should feel a lot better with treatment soon. One thing I do is take pictures of my lady bits from my clitoris right round to my anus in order to be able to look for any changes in the appearance of that area as LS can lead to cancer in that area. You’ll probably be offered a colposcopy now just to check nothing untoward is already happening so please don’t be alarmed if it’s offered to you.

Oh, and when things are bad it can even help to wee through a she-wee to avoid feeling as if you’re being dunked in a vat of acid whilst wee-ing.

Vagifem pessaries 3 or 4 a week

Emoilient in a tub for managing skin dryness. It's the stuff that's like glue, not the white lotion stuff.

Epiderm or epimax lotion to wash in the shower on alternate days. Water on the other days.

I'm constantly monitoring and trying not to overload.

Itchy days or redder days a touch of canesten.

Hth

I have exactly the same.
I was prescribed dermol 500 to wash with no soaps at all

Steroid creme 'emuvate'

I have a bidet and I fill it with salt water. That really relieves

Try not to scratch also I take an anti histamine every night. Reduces the itch

Oh I’m so pleased you went to be seen by the GP, it takes courage when it’s something to do with our “private” bits so well done ❤️ Hoping now you’ve a correct diagnosis you’ll be no properly treated x

now be properly treated* that should read x

It's probably worth joining the LS facebook group, it's useful for people with eczema and dermatitis as well as LS. (I have eczema rather than LS but some of the symptoms are similar).

Most people on that group (and the dermatologist I see) say washing with plain water is not good, it can be quite drying.. You should use an emollient ointment such as Epaderm or Hydromol. You can also use the emollient as a barrier before weeing (if your wee burns) and as a moisturiser after.

Sudocrem can be quite drying but some people like it. Vagisil is perfumed and maybe best avoided. You can get unperfumed lidcocaine 5% cream online or the GP might prescribe it (Vagisil is 2% lidocaine I think).

If normal loo paper feels like sandpaper it could be worth trying bamboo loo paper. Some women like peri bottles but I didn't get on with them.

People have mentioned non bio washing powder but you really need
unperfumed non bio - I think only Surcare and Ecover Zero are unperfumed but you can check the ingredients list on the back of the box - if it has perfume it will say so.

If you buy new pants always wash them before wearing (this caught me out a couple of months ago).

Has the GP not given you a steroid ointment to use whilst waiting for the referral?

Good luck, I know vulval and urethtral pain can be horribly debilitating.

Vagisil is perfumed and maybe best avoided.
Vagisil ProHydrate isn't perfumed. Doesn't seem to contain lidocaine, either.

Always worth checking the ingredients before you buy, though.

Good luck OP! Fellow sufferer (I have Lichen Planus). I'd also expect you to have been given something (like a steroid cream) for the inflammation and maybe a barrier gel to protect the skin from urine. GUM gave me meds for symptoms even before I was diagnosed.
Your GP sounds on top of things, which is great.