Lichen Sclerosus diagnosis

[IckyNC]

Hi All! (NC for this because it's a bit gross)
I've just been diagnosed with Lichen sclerosus, and I'm just wondering how much it's going to affect me really?

I went to the GP after suffering painful sex for about 18 months, which seemed to start after a very long and painful smear test. She prescribed a vaginal moisturiser and better lubricant, and asked me to come back (2 weeks later) to "take a look", since I was pretty nervous and she didn't want to rush it.
The moisturiser etc helped hugely, (DTD twice in the interval, and the second time was pain free), but when she did have a look she got me to point to the specific place it hurt, and then said I had lichen sclerosus, and now I have a steroid cream.

So I think it's a pretty minor case, because I only had the one little spot, and she had to look pretty hard to find it.
I just want to know how much I'm going to have to change my lifestyle... I'm only mid-twenties and hoping to have children in the next 5 years ish, will this be affected?

anyone?

I found coconut oil helped.- used it like an ointment
I stopped using bubbie bath and soap and can't wash my hair in the shower I use aqueous cream instead

TBH it's a horrid thing itchy and sore I'd give anything to have it somewhere else/anywhere else actually
They say there's no cure it just goes away by itself ( I googled - gp wasn't great)

Thanks Heather, did you get the steroid cream too?

No I wasn't offered it. According to dr google it's not good
Looking at natural remedies at the moment

Were you actually diagnosed by a doctor or have you just diagnosed yourself from google?
If the second I'd recommend you try and see another doctor (sorry to hear yours wasn't helpful).
From what I've read there aren't any "natural remedies" for this, the steroid cream is the only proper treatment.

Bump anyone else have experience with this?

I thought that I was getting thrush or similar through using too much bubble bath (I take long baths!) or by frequently changing tampons (very heavy periods) over a period of about 2/3 years.

Then last July the itching got so bad that I decided to go and see my GP. in the days before that appointment I eventually got around to having a look down below.... and had the shock of my life. I didn't have a little white spot as you have described, the area was completely white/grey.

GP confirmed LS and prescribed steroid cream, which eventually stopped the itching - the colour will never return and the labia are starting to fuse.

There really is nothing that can be done except smear on cream when itchy and get checked for signs of cancer (slightly increased change if you have LS).

Gosh that sounds dreadful! is it very painful?
I initially thought I might have thrush too... seems like the standard answer to discomfort "down there"!

Sorry to hear you've been diagnosed with it. I have it too and have had for some years. I use strong steroid creams to try and get some relief. I also get thrush badly as the condition makes it more likely so sometimes it's a mixture of the two!! Google will make you panic about the use of steroids but I figure I'd rather have a functional vagina now while I'm young-ish. Also I need to get on with my life and not be constantly distracted by the itching! I had a csection when I had by daughter to try and prevent further inevitable damage. Let me know if you want to talk anything over.

Poor you. Dp has it and was very distressed at first at the long term prognosis (men often need circumcision) but has got it under control with sparing use of steroid cream and being very diligent about using a barrier cream called Paladin which is brilliant for LS and which you can buy online from the US. Don't despair and do use the steroid cream when needed.

Thanks guys!

Vee88 - how severe is yours, if you don't mind me asking? Did you have to have a C section or was it just recommended?
I'm wondering how severe it needs to be for this to be the case?

QueenDork is the barrier cream suitable for women too? tbh just the moisturiser and steroid cream have made quite a difference already, and it's only been a week!

My gynaecologist says not that severe but my anatomy has definitely changed a lot and I do get a fair amount of discomfort and splitting of skin. She was adamant a c section wasn't necessary because they would just cut me to prevent inevitable tearing. I wasn't convinced! I saw two other gynaecologists who said a c section was appropriate. I did feel I had to present my case so to speak but I defo feel it was the right decision for me.

I know this is a slight resurrection of a thread but I'm recently diagnosed too. I've avoided sex for years as it was uncomfortable, now I know why!!!

I'm on the steroid regime and am tapering down to once a day for a week and then back to twice a day. I'm plucking the courage to try sex again but it's totally killed my libido :(

Look into a procedure called The Mona Lisa Touch , it is proofing very successful for many LS ladies .

Unfortunately only available private in London mostly .

Hi FabulouslyGlamorousFerret!
No worries about resurrecting it, since it's a long-term condition we're all probably still in exactly the same place!
Have you tried moisturisers like "replens"? I found that the pain virtually disappeared after using them for a couple of weeks.

Are you sure it's LS - I know GP has said so but I was "diagnosed" with LS by a GP, however then saw a vulvar dermatologist (amazingly they exist!!) who said it was actually just vulvar eczema in my case.

I was having the painful sex, itching and little splits in the skin but I didn't have the scarred/tight/thickened skin which as I understand it is the distinguishing sign of LS. Do you?

Hello, thanks for the replies. I've not looked into the Mona Lisa touch treatment, it may be something I look into. It's definitely LS, my fanny looks like it's seen a ghost 👻 ! it's also had the scarred, thickened skin - this has settled with the steroids though. My GP is ace and randomly is a gynaecologist registrar with a specific interest in LS. I've got the Replens and have used it a couple of times, do you think I should stick with it?

How does all your LS manifest? Mine was an itchy, hot sore fanny with lots of little white pimples (which I thought were milia) and thickened areas, this is the first symptomatic flare and I do appear to have lost some of my labia minora 👎🏻

Hey, It's been suggested by my gp I have LS. Although I'm unsure. I got an irritation about 4 weeks ago after accidentally using fragranced loo roll. After two thrush tablet and a variety of creams I now have betnovate and been told to ask with only Aqueous cream. After LOTS of research I don't seem to have any of the symptoms, no whiteness or itching, just a sore area thats red ( no lumps spots or white edge ) and no change in how I look there. Wondering if thats usual. Advice welcome.

Hi @Chive74
Was your doctor not sure? I think with Lichen sclerosus you can see the kind of white marks/stripes. But sadly there are lots of unpleasant things that can affect this area!

Hi ickyNC. Thankfully I contacted her and it was Lichen Simplex. Which was a severe dermatitis. It’s gone now thanks to Sudocrem. I have read so much about LS and have to say it sounds awful. I hope research improves so a cure can be found. So many seem to be suffering, many not finding out till damage hs been done. It’s horrible.

Oh that's good (I think lol!)
Love sudocrem, I've tried putting it down there tbh and I think it helps a bit with the LS too. Used to put it on my nails as a teen who cared about having shiny nails!

Its magic stuff ickyNC. Yes good news. My symptoms were caused by frangranced loo roll. But its taken 7 weeks to go. Good luck managing LS. Seems if you catch it early you’ll be doing ok XX

Hi all
Old thread been reading it and did not want to start a new one.
I'm over 50 and was diagnosed with LS a few years ago. Ir was quite advanced as i did not go to gp kept on using OTC meds for infection down in my waterworks area.

I found penetration more and more painful and when we did, the same day and following weeks it was very painful. I don't look down there but my OH noted very severe red and with patches, evetually to gp and hospital and didnosed with LS

Use steriods almost daily/weekly for years on and off, keeps on flaring up. Had a water infect down there last week.

Are there any alternative therapists and though I'm shy I don't mind seeing a male one etc.

Some of whats written here I do ie don't wash with soap down there but do use scented toilet roll and will change. Wear cotton underwear and loose as well but desperate to enjoy the freedom from it and go back to normal as were were quite active before.

Btw we live in kent very close to London

Thanks