When I was first diagnosed I was both floored and happy because I finally had an explanation for what I’d been coping with for years thinking it was just my body being weird, or a bunch of different things going wrong. I asked so many questions when I started this journey. Now, it’s been a year and I’m symptom free 99% of the time, so I thought I’d share what worked for me.
1. Changing underwear. I stopped wearing anything remotely synthetic, but I can’t stop wearing underwear. So I went with modal cotton instead.
2. Using emuaid whenever I needed it. I can’t remember who recommended it to me…but I hope both sides of your pillow are always the perfect temp for your beautiful face!!
3. Changing my body wash. I actually switched all of my body products to this brand because I also have eczema and psoriasis, and holy cow has this made a difference all over my body. I previously used Aveeno products and this brand is so much better in my opinion.
4. A good water based lube. We tried a bunch and this is one that we keep coming back to. Because sometimes I’m 100% in, my lady bits are not.
5. We switched to a bidet and I use it exclusively with these baby washcloths to pay myself dry.

What didn’t change:
1. Laundry detergent. I already use a free and clear all or tide because of my other skin issues, so I didn’t feel this was necessary.
2. Sleeping naked. I already slept 100% naked and after reading a bunch of articles and posts it seems like that’s best.
3. I still have sex with my husband, he’s just more aware and cautious…and I’m a better communicator now when I feel like my skin is too tight or if I can tell I’m not as slick so that we use lube.

I hope this helps someone. ❤️

Went to OB today for my annual and we talked about my symptoms and my inkling of LS. When we did an exam she said it doesnt look like LS at all and she didnt think it was even worth a biopsy. I have patches around my clit, labia, perinium so I was confused by that. I have read not everyone with LS gets patches anyway?? I tear, i have lots of itchiness. My mom has LS and the doc said it can run in the family...so why are we blowing this off? The plan is to change my detergents, soaps, and use a fungal cream to try to treat this "itch and scratch flare" as she called it and see if it gets better. I just feel like she has sent me on a wild goose chase. We have a checkup in 3 months, if nothing changes can I just ask for a biopsy? Just beg her to humor me i guess.

I was diagnosed with LS after breast cancer meds put me into medical menopause. Since then, I have not been able to engage in sex with my husband. It feels like shards of glass inside every time we try. I cannot use estrogen because of the specific kind of breast cancer I have. My gyn told me to use replens, oncologist said hyaluronic acid moisturizer. Some things I have read said to use Vaseline as an emollient before applying lube, some other articles say no Vaseline as an emollient before sex. I’m very rurally located and my nearest doc is a 2-3 month wait to get into. Any suggestions of what works, order of products, timing, etc. would be very appreciated.

I recently tried emu oil and emu-aid max and my episode ended much sooner than usual.

I’m hoping to hear from anyone who has been through something similar, especially anyone diagnosed with lichen sclerosus (LS) or lichen simplex chronicus (LSC), or who has seen a vulvar specialist in Canada.

In May 2025, I saw a doctor because I had a recurring tear near the vaginal entrance that would reopen almost every time I had intercourse. The doctor suspected lichen sclerosus and prescribed clobetasol (Clob) and vaginal estrogen. However, I got pregnant shortly afterward and was instructed not to use them, so I never started either treatment.

Interestingly, during pregnancy, I was doing perineal massages and the tearing completely stopped.

After giving birth vaginally, the gynecologist I saw through the public healthcare system prescribed clobetasol, without telling me how to use it or what areas to put it on??However, I wanted to wait until I could see a specialist, so I booked an appointment with a urogynecologist.

The urogynecologist felt that my symptoms were more consistent with lichen simplex chronicus rather than lichen sclerosus. She explained that she didn’t see the typical white patches associated with LS and didn’t think a biopsy would be useful. She also said she wouldn’t know which area to biopsy.

She prescribed a different topical steroid to apply to my labia majora (which isn’t usually where I have itchiness) and the sides of my perineum, as well as Imvexxy (vaginal estrogen). Since I’m breastfeeding, I told her I would prefer to wait until I’m done breastfeeding before starting the estrogen.

I went back for a follow-up because I was still experiencing itching, but she remained convinced that it wasn’t LS. She also explained that she wasn’t comfortable prescribing clobetasol because she was concerned it could cause more harm to healthy skin if LS wasn’t actually the issue.

I’m honestly feeling lost and increasingly anxious about this.

I’ve now had different gynecologists suspect lichen, while the urogynecologist, who has seen many cases, doesn’t believe I have LS. I understand that there can be overlap between these conditions, but I don’t know how to feel confident in the diagnosis when I’m still experiencing symptoms.

My current symptoms include:

Itching labia minora.
Itching around my anus, causing fissures.
A history of recurrent tearing at the vaginal entrance during intercourse.
Changes in the appearance of my vulvar anatomy since giving birth, although I’m not sure what is normal postpartum change versus something related to a skin condition.

I’ve been dealing with this for almost three years, and I’m exhausted by it and it’s causing me to be majorly depressed and scared to have intercourse with my husband. My biggest fear is that I actually have LS and that delaying appropriate treatment could allow it to progress and cause permanent architectural changes.

For anyone who has been in a similar situation:

-Has anyone been told they likely have LSC rather than LS, only to later receive an LS diagnosis, or vice versa?
-Can you have LS without the typical white patches?
-Has anyone had a specialist recommend against a biopsy because they couldn’t identify an appropriate area to sample?
-Would you seek a second opinion from a dermatologist who specializes in vulvar skin conditions, or another vulvar specialist?
Can anyone recommend a good vulvar specialist in Canada, ideally in Quebec or elsewhere in Canada if necessary?

Hello! I’ve had an increase in “flares” and gyn wants to do a punch biopsy on October 23 when I’m in for my annual.

I’ve read through different threads on here and am slightly freaked out. She diagnosed based on visual appearance and symptoms almost two years ago and clob and estradiol have helped but recently it’s worse so I want to get answers.

Here is what’s making me nervous.

1. Pain because I have to work. I’ll have a weekend after but I can’t take time off work.

2. November 5th (13 days after) I have to fly on a plane and be in a wedding two days later and fly again to come home on November 8th. There’s also going to be a lot of driving, so sitting and more sitting. I’m prone to lots of Inflammation and swelling as it is.

Should I reschedule the biopsy for when I’m back from my trip? It’ll probably be a delay getting it due to work schedules and no available appointments so idk if waiting potentially until January is smart either :/

Anyways, I’m just nervous and angry at life and this circumstance and could use a different perspective. Thanks!

I've recently been diagnosed with LS and I've been using the steroid cream for a short while (about a month). How do we know whether we are applying it correctly? I'm not itchy anymore but I still see some white patches, does that mean I'm doing something wrong or is 1 month too soon for them to go away. I usually just apply a small amount to the white areas. How do you all do it? Do you apply it directly using your finger?

Hey all, does anyone have any recommendations for an LS specialist anywhere in Virginia? Maybe in the Richmond, VA area? I need a second opinion and on the hunt lol.

Hi all! I have Lichens Simplex Chronicus and Dermatitis, and this past week my labia majora has been super itchy. Its driving me nuts. Sometimes I have to go in the shower and run water on the outside to relieve the itch.

Anyway, while I was resisting the urge to scratch, it got me thinking that I could really use a numbing cream right now. Is that even a thing? What do you use to help when you're itchy down there 😩? Ty x

Maybe a strange question, my dr has gone back and forth on if I have ls. I do have atrophy and burning. Do any of you get hyperpigmented areas? I’m going to as for a punch biopsy next.

My dr has recommended a biopsy. She thinks i could have lichen simplex but treatments haven't relieved my symptoms. She told me she would do a gentle scrape biospy. But after doing research on this group and online, it seems a punch biospy is what is best... has anyone here had a shave biospy and it gave accurate results?

I had it today! Hopefully my clitoris bounces back! It didn’t hurt. They numbed me so so so good. I’m tender. But I thought it would be so much worse. Wish me luck!

My perineum is effected by LS and is also 2cm (half the average). I am 32 weeks pregnant.

If anyone is similar to me and has given birth vaginally I would love to hear your story!

I am freaking out over here..

Diagnosed today during a well woman visit. I have no symptoms. Doctor said I have a white patch and minor fusing of the labia minora. I'm completely freaked out. 58 post menopause, woman, hysterectomy last year, no hrt. I feel so lost.

Hi

(I apologize in advance, if ny English is incorrect, as I am not a native speaker)

I went for a doctors appointment today, to get a new subscription of hormons do to early menopause (I'm 42 and was diagnosed with menopause at 38). The doctor did a routine check while also taking a smear test and she found my skin was very dry and one of my labia was almost gone. I started on a very fatty cream today and need to wait until Monday to call a gynecologist, because the only one in my city are on vacation this week.

I have a lot of thoughts about this diagnosis and I'm also worried that it has developed into cancer (which I have read can happen to about 5 percent), as I have a 2-year old at home. I have itching everyday, but I just thought it was yet another symptom of menopause, so I haven't really tried to do anything about it.

So are you guys willing to share some of your experiences with me and maybe reasure me, that this diagnosis is not a complete lige changer and that you can have an almost normal life? Right now I am concerned about everything, like do I need surgery, am I having cancer, will it always itch, am I more disposed of other deceases, you name it.

Wow! What a whirlwind of a week, I only got my official LS diagnosis today with the results of a surprise biopsy that was taken last week - ouch! - after many years of being treated for YI I decided to book a specialist appointment with the encouragement of my midwife (our 3rd little nugget is now 9months old). Appointment finally happened last week in the midst of a bad flare up. The doctor was super nice and basically confirmed LS on the spot and immediately got me clob/a treatment plan but wanted to biopsy a skin patch as she was suspecting pre cancerous tissue. Lo and behold, just got the call today that it is in fact pre cancerous and will have to be removed asap plus a laser treatment of the affected area. I'm in bits, still trying to wrap my head around the initial diagnosis that even though expected came at a bit of a shock. Now surgery to remove a large chunk of affected tissue 😭 I guess all this to say if you have a hunch that it might be something other than your long trusted gynaecologist suggests go and have it followed up by somebody else. I've been running around with this for more than 5 years and now I'll have to pay the price.

Has anyone had surgery on their LS? I know this is very different depending on each person but I'd be elated to hear some experience so I know what to prepare myself for.

Hallo zusammen, zu mir: Ich bin 20 Jahre alt und habe seit 10 Monaten starke Schmerzen, Juckreiz und Brennen, sowie offene Wunden. Ich wurde vor 4 Monaten mit Lichen Sclerosus diagnostiziert. Mir wurden erstmals Behandlungen verschrieben, die nichts gebracht haben. Dann habe ich Clobetasol bekommen. Es machte es ein wenig besser. Starke Schmerzen beim Geschlechtsverkehr blieben jedoch erhalten. Nochmal bei einer Lichen Spezialistin gewesen, stellte sich raus dass ich einen leicht stenotischen Hymenalsaum habe. Jetzt soll ich eine estrogenhaltige Creme anwenden, sowie meine Haut mit Dilatatoren dehnen.
Um ehrlich zu sein, habe ich echt Angst, dass das auch nichts bewirken wird. Hat jemand schon was ähnliches durchgemacht, wenn nicht sogar dasselbe? Hat jemand gute Erfahrungen mit dieser Behandlung gemacht? Ich freue mich auf alle Ratschläge und Worte!

is anyone using opzelura for LS instead of clobetasol? my dermatologist and vulvar specialist both said it can be used in place of steroids but since it’s newer, there’s no data about whether it decreases the risk of vulvar cancer. I’m curious if anyone has seen good results with it?

I was diagnosed in June with LS and as I am starting to accept this is going to be my life now. I still get extremely sad and I’ll look back at pictures before I started having flares and symptoms and just think to myself “wow I was the happiest I’d ever been in my life” and I sit and reminisce and grieve my life not only was I diagnosed with this but I feel like so many parts of my life fell apart around the time I was diagnosed as well. I’ve made a lot of progress and honestly barely itch around my entrance anymore but the sides of my vulva have seemed extremely angry and I don’t know what to do or how to stop it I’ve been on my clob treatment since June I miss my work outs and my gym clothes I miss not being scared to go outside because of heat and sweat I’m only 26 and I feel like this auto immune disease is running my life.

I have had itching, painful skin and last time I looked there were changes - my self esteem is on the floor.

I started topical oestrogen but it's not made much difference. My son's eczema cream does help.

I have a GP appt soon. Would you treat possible thrush even to rule it out for the appt?

I'm sore and miserable about this situation. My body is unrecognisable. The LS symptoms and a newly acquired disability.l

Hi everyone. I was diagnosed with LS two months ago and I am really starting to feel defeated. I just feel like my quality of life will never be the same. I had my first flare up five months ago and since then I have been dealing with constant itch, discomfort, and pain. It comes and goes but when it’s there it’s all I think about. I am really losing my mind. I mean what am I supposed to do? Just itch the rest of my life? I am only 23(F) and I just feel so sad thinking about my future. These last few months have been absolute hell. Nothing seems to be working. I was on clob for a few weeks but my skin started feeling so thin and fragile & kept tearing so I stopped. I just don’t know what I am supposed to do. I haven’t even told anyone about it because I am so embarrassed truly so I feel like I’m suffering in silence. I find it hard to be happy knowing that this is my new reality. Idk what I really am looking to hear but this is just so hard I am so sad.

My 13 years old daughter got diagnosed in August. She’s been on steroid for 2 months now.
She never had itching as most of you report as symptoms. She has inflamation, burning and tearing. She says it’s painful even to touch it.

We thought it was going better with healing of the labia fissures but she keeps having an inflamation in her vulva and the pain remains.

She followed the instructions of the GYN and went last week to 5 days clob and 2 rest days. However after these 2 rest days she’s experiencing more pain. So I do not want her to do rest days until the next visit at gyn.

Also, she is the unlucky one and has the period cycle of 2,5 weeks. I sense this is not helping her to heal.

How long can it take for clob to calm this ongoing flare up. Honestly I assumed it would be about 6 weeks, but it looks like it getting sligthly worse.

Do you think it’s normal? She is 13 and 2 months on steroid and it’s still not under control😢.

Dxd 7/15/26 lichen schlerosus and golf ball size bartholin cyst. Week later lansed cyst. Cervical spondylosis of the neck on top of all this. Had to quit running and all exercises. No real instructions on self care at home just this is what it use this med is what dr said here’s the name you can look it up said the nurse so I thought one and done! Then my life turned upside down. Husband just started testosterone shots and then this happened. Cruel timing. He has been so patient and gentle. No pressure just care and help then he says he’s stopping taking testosterone til I get better.

Question here: I’ve been on low oxalate AIP diet because I’ve read people having triggers that made symptoms from what they ate. So almost 3 months now still in first flare ever. Dermatologist I saw yesterday although much better explaining told me there was no scientific evidence that says diet has anything to do with it. Your thoughts???

i’m trying to understand what happened….
diagnosed lichen sclerosis and on maintenance dose of clob 1x week.
the past few days pain in my clitoris has gotten worse and worse like it’s “stuck”? it’s swollen and white spot growing and is soooo painful. i thought for sure it was fusing. then i apply clob and soon after it breaks open? kind of like a pimple? i read of oil and stuff getting caught under the hood so idk if that’s what happened but immediately i felt relief. but now theres a hole in my hood that’s getting bigger and looks like raw, like the skin essentially ripped.
i’m calling my primary provider tomorrow but she’s new and not the one who diagnosed me so i don’t know that she’ll be very familiar… i suppose i need to find a gynecologist.
anyone experience similar?