Has anyone heard or or experienced this? TMI!

[Theunhappybunny]

Does anyone have experience of Lichen Sclerosus?
If so, what kind of outcome have you had with it?

Google does not seem to be the place for positive stories

*heard of
Damn typo in the title

I’ve got it. Caught reasonably early, most cases are not dangerous-it tends not to get cured, simply stays out.
I got a steroid cream, to be applied daily for a month, every other day for a month, then twice a week for a month then I was due to go back to the consultant but the world turned upside down so had a three month pause. I’m due back later this month.

Stays put, not out!

Thanks @MrsWooster
Have you noticed your symptoms have improved since starting the treatment?
Do you mind me asking if you were diagnosed with a biopsy?

I’m so overwhelmed with the doom & gloom about it on google. I know I should stop looking it up but I can’t help myself. Feeling so incredibly down.

Not a biopsy, just consultant looking at my bits. The original patch seems better-it would regularly ‘tear’, feeling like a small cut, and hasn’t done so since I started the treatment. There seems to be another spot developing so I’ve gone rogue and started steroid creaming that too - tricky choice as it thins skin, apparently.

That’s the thing, even the treatment has its concerns.
Has it impacted your life much? Sex life? Sorry, that’s so personal, but I must admit, it’s one of the things I’m really worried about. That, and the associated cancer risk. Gah, I need to stop googling.
Do you have any white patches, have you noticed any improvement in them? Again, so sorry for being personal, feel free to ignore

Honestly don't be brought down by google it's awful. There are amazing Facebook groups and the people on there are so supportive and have so many tips and advice.
Soaking in a bath of bicarbonate of soda a few times a week is so good and the clobetasol as required.
Trying different diets to see if they help and overall health and emotional wellness work wonders too.
I was diagnosed 10 years ago and was so scared but lived it with it with minimal bother as I choose to not let it consume me.
Borax is touted as a miracle cure but I'm too scared to try it.

Hello. I have it too. For years now actually.
I wasn’t diagnosed through biopsy. I expected to be but my GP was on top of it as soon as I talked through the symptoms and she said it was pretty classic in its presentation. Night time insane itching, white peeling skin like rice paper is the only way I can describe it. Also got tears from time to time.
I use dermovate and for me that’s been life changing. My skin looks great and if I keep on top of any itching with it I rarely get white patches anymore at all
I haven’t noticed any impact on my sex life except for recently when I moved house and lost my steroid cream and then was just itchy again and sore. New prescription sorted me out within days.

Oh thank you all. I need to hear that people can live with it without impacting their lives.
I’m losing sleep over this.
I must point out, I’m yet to be formally diagnosed, my dr put me on a treatment for thrush before trying anything else. But I am utterly convinced it’s LS. I have all the classic symptoms, I’m unsure what else it could be. Itching, tears and white patches. It’s definitely not thrush.
I’m apparently too young for it though which is why my dr wanted to rule out the obvious first.

OP I’m in my 30s so young to have it too! I hope you get a suitable treatment soon I can’t tell you how different it is now I’m using the right steroid cream

I’m in my 30’s too 😔
Feeling very down about it all today. Itchiness has near enough gone after the thrush treatment (maybe I did have a touch of thrush?) but the white patches are still there. Awful to have it constantly on my mind.

I had horrible itchiness and red/white patches on my vulva/perenium. GP no help. Saw a private gynae who specialises in skin conditions who was great. She diagnosed genital psorasis. Don't have psorasis anywhere else but have a family history. Used a steroid cream and it cleaned up within a week. Not come back since. Definitely worth getting a referral. Good luck getting it sorted.

Thanks @Whatisthisarghhh !
Perhaps it’s not LS then? 🤞 in my frantic googling, the only result for white patches on vulva is Lichen.
Seeing my GP again soon so hopefully I will get to the bottom of it. Thanks for giving me hope!

Far too much information coming... I’ve checked how things are looking tonight, down there. I’m currently on day 4 of my period (tmi, so sorry) but the white patch seems to be fading. Now, I don’t know if this is a hormonal change to the white patch or if it is actually fading (unlikely, as it’s been there for 3 months or so)
Has anyone with lichen actually had fading of the white patches and then had them come back?
I just don’t know what’s going on with me, I feel so stressed about it all 😔

Ah you poor thing. I found that my genital psorasis flared up when I was stressed as do many skin issues so worth baring this in mind. Vulva skin conditions can be so complex. The itch /scratch cycle can be do vicious and you can end up with lots of small tears from itching in your sleep. I'd push for a referral and do some research in to gynaes with experience in vulva skin conditions. It is such a specialised area even many general gynaes wont have a good understanding of all the issues. Let me know if you are near London and want the name of the doctor I saw.

Hi, I've had it at least since I was 17, I'm 43 now. Was proven with biopsy when I was 25.
I had steroid cream initially and then it seemed to get a bit better when I was pregnant.
It's not been bad for a while now, sex life not affected at all, I have purple patches though from damaged skin, and things aren't as 'plump' down there as they used to be.