Lichen Sclerosus

[Lingyt]

Six weeks ago I saw a nurse at my GP surgery having experienced what I can only describe as heat in my vulval area. She examined me and said she was 99% sure it was lichen sclerosis and had likely been there for a while. She said it was fairly common and due to lack of oestrogen. I was prescribed Hydromol, Dermovate 0.05% w/w cream, and Estriol 1mg/g cream and told to come back in 2 months if the medication doesn't seem be working and I might be referred to a consultant. The nurse was very kindly and the medication has improved things but still have some heat.

I've since read up on the condition and links to vulval cancer and am feeling that my condition should be monitored which there was no mention of. I'm mid 60s and otherwise healthy.

Anyone have experience of linchen sclerosis or similar?

Good that they have identified it-I had it for many years with regular flareups to the point I couldn’t wear trousers and often had to wear dresses with no underwear -horrible. I was just fobbed off with thrush cream that was obviously useless. It was so debilitating and impacted hugely on my marriage. Then a locum doc diagnosed LS, which I had never heard of (pre MN/socidl media) prescribed Dermovate and fixed it in a couple of days /a real miracle. I bless her name! That was about 20 years ago and I’d suffered it for years -vulva was s horrible lumpy mess. I’m now 65 -no recurrence since then and vulva normal and I have very good sex life.

MelanzaneParmigiana Thanks for sharing and so glad you eventually got the treatment you needed

I don't think it's common; it's a horrible condition and can really affect your life. Some people I've chatted to online haven't been able to work, and a friend of my sister's with LS did have cancer and had to have large areas removed. Mine is under control now but only after significant atrophy, it has had a big effect on my sex life, and I get the area checked regularly at Guys Dermatology and was referred to Fiona Lewis early on (I've had it for around 16 years).

mullers1977 I googled Fiona Lewis and found this helpful. Glad yours is now under control.
https://p-happi.com/blogs/phappi-blog/what-is-lichen-sclerosus?srsltid=AfmBOoq-odao3HVd6bxapYI21S0xJ3YH-KaiygOgL9eq7Vpj5qbbGNzl

I'm very much feeling that the nurse I saw, although kindly, underplayed the condition and the need for follow up. I'm about 6 weeks into using the prescribed treatment and although its helped a lot, I still feel some heat and sitting and sleeping can be uncomfortable. I've never had itching so wonder if it is actually LS as everything I read lists itching as a major symptom.

Unsure whether I need to wait until I've been using the the medication 2 or 3 months before going back to GP surgery and asking for gynae referral.

I didn’t really have any symptoms except atrophy and the white patches x the atrophy can carry on so I think you should insist on being seen by an expert asap x

Lingyt yes I will. Wonder what the waiting time is for a gynae appointment.

Sorry mullers1977 the above should to you not to myself!

No worries please feel free to keep in touch, it’s a big of an odd one LS, and it’s been hard to discuss with others for me, I’ve also ended up with Vitiligo in the areas the LS effected x

I see a dermatologist for my LS. I was referred to them by my gynaecologist.

Jellybelly80 thats interesting, gynaecologist then dermatologist.

Could it be that you're suffering with vaginal atrophy?

The cream should go some way to easing symptoms but unfortunately does take time.

Hi there, yes. That’s right. I went to my gynaecologist as I thought it was the person I’d see but she then referred me to the dermatologists even though she knew by looking at my vulva just what I had. I’m currently in great condition and was recently told by the dermatologist at my 6 monthly check up that if she didn’t know I had LS she’d not really know from looking at me these days - we’re putting it down to the Mounjaro Ive been on for 18 months as that’s the only thing that’s different in my life. Sorry, I had been on a steroid cream but I no longer use it and she’s said she’ll dismiss me from her clinic in May. I’m not going to agree to that though until I’ve been off Mounjaro for a year and I haven’t had another episode/outbreak.

I have LS, diagnosed by GP around six years ago I think, when I asked for estrogen cream due to dryness and fissures.
Dermovate works really well if I get a flare - usually after hot or damp, or eating lots of sugar.
i have never seen a gynecologist or dermatologist- the dermovate works after a week or so which suggests the diagnosis is correct.
i don’t feel this is a need for monitoring- as with any risk (eg I am very fair so often check skin) , keep an eye on it and get any changes examined.

Hi there, re the vitiligo - I had it as well in the classic figure 8 shape around my vulva and anus.

I think you’re fortunate that you don’t feel your LS is in need of monitoring and that dermovate works well for you. Other women aren’t so fortunate and can be in a terrible situation with their LS.

Really appreciate all your comments and sharing. I'm a bit confused as to what a flare up is. Theres times my vulval area feels normalish, at other times it feels hot. Is that a flare up? Also had presumed I needed to apply the creams twice weekly, or whatever, and not just when there's a flare up

I was eventually diagnosed during Covid. I was given nurse phone appointments with a 6 week wait..I was in agony. Sitting on the sofa,bare from the waist down covered in a blanket. Eventually after months,saw the nurse, then the head nurse then a GP,who panicked. 2 week cancer pathway! They couldn't decide derma or gynae,plumped for gynae. She prescribed dermal wash. Gave me leaflets, said to check area monthly. The washing made it a 100 times worse, I was laying in a bath of salt water in the middle of the night crying with the pain. After a year, I went private, dermatologist, she said the Dermal wash is antibacterial,far too strong. I now use Epaderm to wash vulval area and as a moisturizer. I had heavy duty steroid cream 6 weeks, then milder one. White cotton pants only. I do have vaginal atrophy,vagefem vaginal tablets twice a week.

You look for white patches.

mine was diagnosed by biopsy. it doesn’t hurt and it is just a little red mark but the skin tears and bleeds, making sex painful.

i got cream from the gp but struggled wirh getting it in the right place and it just ended up everywhere else. so i gave up.

i was told there is no other option. it’s not spread.

@Lingyt a flare up for me is when all feels normalish then for no real reason it starts to feel sore and stingy/burning down there.
That feeling when your hands are cracked and dry and you apply hand cream, the stinging that can happen, well that's similar to the feeling.
I've upped my cream to daily use as I've had a few flare up this year alone.

Is it Estriol or Estradiol cream you were given?
Irrelevant really but one is a bit stronger than the other.
We're you given the advice to do the two week loading dose first before dropping down to twice weekly?
It can take time, a few months for the cream to take affect.

There's a very good online forum site called Menopause Matters that's really useful for information as well as a few good forums if you have Facebook.

There’s a very good FB group for LS

Shatteredallthetimelately my symptoms dont allign with vaginal atrophy so I think not. Using estriol and was given the two week loading advice. Seemed an inconvenience to use at first but soon got used to it but obviously wishes I didn't have to.

Jellybelly80 will take a look at the LS FB group

Mine came on during menopause , I self medicated with some amazing cream I got online from Australia of all places as GP had said to give it 6 months first before medical treatment to see if it went away!! I had it for a year before I even went to GP. As it happens the cream totally sorted it within 5 months - totally killed my sex life- I don’t think it’s as rare as people think - I suspect like me plenty of women do nothing about it out of embarrassment

You didn't get "symptoms" as such with vaginal atrophy. I was unaware I had it.i have never suffered from vaginal dryness..I do have a cystocele,caused by the atrophy and lack of estrogen.