r/lichensclerosus

35F. I don’t know what to do anymore. I was visually diagnosed with LS by a derm in March of 2024. Went to vulvar specialist two months later and while she agreed I did have 30 percent labial reabsorption, she said that alone didn’t indicate LS and she didn’t see anything else that did. Told me biopsy was what ultimately decided. I’ve had 3 punch biopsies from different spots and then one perineoplasty surgery large tissue sent to pathology. 2 of the punch biopsies came back as chronic mild inflammation. One was also chronic mild and they did some allergy test that showed it was mixed dermatitis basically but not due to an allergen which my gyno said made the result consistent with eczema. Then a few months later the surgery came back as lichenoid inflammation and the surgeon said it could be LS.

I’m stuck in limbo. I need to know what the hell I have. I need to know if I have a vulvar cancer risk. I don’t want to use potent steroids if I don’t have LS. No one can actually tell me what I have it seems. Derm says LS. Gyno says maybe eczema then confirmed it as so with pathology. But then I ended up with lichenoid inflammation and surgeon is back to possible LS. I have labial reabsorption and I have tearing during intercourse but I don’t have the white patches and I don’t itch and I don’t have the cigarette paper skin.

History: I’ve had a “sensitive” yeast prone vagina/vulva since forever. I’d get random itchy nights as a child and I remember crying because it couldn’t be scratched. It would last overnight and then it would happen months later again. I’ve been tearing during intercourse at the posterior fourchette 6oclock area since 18. It was always like paper cuts and it stung and such but was bearable. It’s gotten worse over the last few years and came to a point where I had to call off sex until I got this figured out. I even got a perineoplasty/partial vulvectomy. Didn’t work $5700 later. I have a history of HPV related vulvar, vaginal wall and cervical precancer. So steroids are terrifying for me to use if I don’t need them. I can’t have sex because of the pain and it’s sore for a week after. Haven’t had a regular sex life since April of last year and it wasn’t really even regular before then. I’ve tried it 3/4 times since and ripped so bad.

I’m scared and my labia seems to still be shrinking.

Every day all day I’m thinking about what is happening to me.

Hi all, recently diagnosed by sight with LS at my annual (I made an initial post about it). Anyway, I’ve been using Clob for about 5 weeks. Almost immediately, I felt better. No itching (my main symptom) and I even think some color is coming back. Cut to about a week ago I have burning in the vestibule region. I was applying Clob all over bc I didn’t really get any direction on where (just noticeable areas vs entire vulva). From this sub I determined maybe I have a yeast infection. I asked my doctor and she prescribed terconazole. It’s not helping at all. Could this something else? It’s been about 3 days of treatment. Any similar experiences would help me a lot! Thank you!

Besides rxs clobetasol twice daily vaginal estrogen 1/4 tube daily stopped petroleum jelly. I have had good results with Johnsons oil gel. Has coconut oil and Shea oil. No more coconut oil by itself either. Dove sensitive bar soap. Very little on private area. Shower head spray to clean. Spray water with spray bottle after toilet pat dry small amount TP then apply Johnsons oil gel. Lots of water. Diet soda which I like causes me GI issues constipation so I limit. And stress. Like quiet in the evening. Read books. Diy home decor magazines. So tired of the toxicity everywhere right now​

I have greatly improved with clobetasol and daily vaginal estrogen. Just saw my ob gyn again. He said I can citrate the daily vaginal estrogen but if it does not work can keep using it nightly. This may sound like a stupid post but my breasts increased in size had to buy larger bras feel self conscious. Partly because my husband loves my new size. I am modest by nature with boundaries limits. I am also 65. Anyone experience this and can you comment? ​

I can't be the only one here who has both of these problems but it seems rarely discussed on here.

I'm 5 weeks into treatment and about 2 weeks ago I had those familiar prodromal herpes symptoms for the first time in a decade. I mentioned to my doctor that the clobetasol was suppressing my immune system locally and maybe it would be good to do a longer low dose preventative course after the acute course since I was going to be using the clob for at least 3 months.

I don't know if he disagreed with my logic or if he didn't appreciate me having ideas as to my own treatment, but he said he'd prescribe the 7 day course and give me refills for if it came back.​ Well it came back within days of finishing it. So I got my refill from my pharmacist who was reluctant to refill it again so soon and told me if it happened again to see my doctor about a referral to a specialist. Well, once again I felt it coming on within days of finishing that course but I just decided to give it a few days to see what happened, and now I have several full blown herpes lesions (albeit less inflamed than they otherwise would be due to the clobetasol).

I'm super bummed out about it because during those 2 courses of antivirals I really thought things were looking good and now it just generally looks bad again and now I have to let my doctor figure out how these two diseases work together to create a vicious cycle (I'm tapering the clob now so maybe my immune system can attack the herpes but also it could trigger my autoimmunity so then I could ramp up the clob again for the LS and then just keep a herpes infection going etcetera etcetera).

I found a single case study online with an elderly woman who did a 30 day course of both antivirals and clob, so I feel vindicated, but it costs 50 bucks to download and print it.

If anyone has any advice about how to treat these things or how to manipulate your GP into prescribing the treatment that you know you need because you're more of an expert on your condition than they are while making them think it was their idea, I'm all ears.

I have one question for those of you with LS: What exactly do “white patches” look like? Are they always truly white?

I have what I would describe as a narrow “ribbon” on each side, just outside the labia minora where the pubic hair begins. They’re almost invisible and are more beige, caramel, brownish/ yellowish, not white at all. Those areas were what my gynecologist based the LS diagnosis on.

I had been dealing with burning, itching, urethral spasms, painful intercurse for over a year. I changed doctors a few times. Got pelvic floor therapy. I was diagnosed in March with LS, vulvodynia, and eczema, but only after I finally found what I thought was the “right” gynecologist. I have no fusion and no obvious white patches.
I started clobetasol immediately and got some relief. But my symptoms never disappeared completely. I was also using lots of Linola (a fatty moisturizer).

At my next follow-up, everything changed. My gynecologist suddenly said, “Wait, maybe it isn’t LS after all.” She told me to stop the clobetasol and switch to Protopic for eczema, and she prescribed estrogen cream because she thought vaginal dryness might be causing the burning and spasms.
Then the heatwave hit. I have never experienced itching like that before, it became almost unbearable.

Thankfully, my second follow-up was close. But that appointment left me even more confused. She examined me and said, “Well… maybe it is LS after all. Why aren’t you using clobetasol anymore? Who prescribed the estrogen? That’s not useful.” (And I was like…uhh you?) She then told me to restart the clobetasol regimen, prescribed yet another cream (this time one containing urea for the itching), and advised me to continue applying plenty of Linola.

I’m so frustrated. It feels like every appointment completely changes both the diagnosis and the treatment plan. I don’t know what to believe anymore. The burning and the urethral spasms disappeared nearly completely. But the itching became worse.

She doesn’t want to perform a biopsy because she says they’re often inconclusive. She works within an LS network and has LS brochures all over her office, so I wonder whether she might be seeing LS everywhere. At this point, I’m definitely planning to get a second opinion.

Has anyone else been diagnosed with LS without obvious white patches? Or had a diagnosis that kept changing like this?

So I go to a vulvar specialists, she told me that if treatment doesn’t work within 2 weeks for a flare then treatment needs to be reevaluated and this goes for when you first start and any future flares. Then once symptoms are gone go back to maintenance treatment. I’ve never heard of this before, does anyone else’s doctor take this approach?

I was diagnosed with mild Lichen Sclerosus after a skin biopsy. I have some redness and white patches, but no doctors have ever talked to me about my clitoris. I am too embarrassed to ask them.

​I am very worried because my clitoris has shrunk back and become very small. I have lost a lot of sensation there. My orgasms do not feel as good anymore and sometimes I cannot reach one at all.

​I have been on the mini pill for 3 years. Could this birth control be causing the shrinkage and loss of feeling? I also have Clobetasol ointment, but I do not like using it because it causes me discomfort and flares up my pain.

​Has anyone else had their clitoris get smaller or covered up because of LS? Did changing your birth control or using an estrogen cream help bring your sensation back? How do you use your steroid cream if it hurts?

Curious to all of you.

What triggered your L/S to get checked?

Was it just all of a sudden, after an infection or event, just looking down there etc?

Anyone experience this.

I was thinking maybe it was a urethra fusion/stricture but I do pee a lot whenever I go to the bathroom so maybe not.

Hi everyone, I wanted to come on here and share some kind words. I know Ls is not what we asked for, it’s down right annoying however it is very manageable for the majority of people. I see on here all the time, especially young women, scared of their future with this (this was me as well). I would like to remind everyone that is not one size fits all. Just because you read about something terrible happening to someone else with Ls does not mean it will happen to you. With the right treatment disease progression should be at a halt, this is the reality for the majority with Ls. Unfortunately, it’s not as easy for everyone and that is who we mainly these stories comings from. Ls is very individual and the outcome varies person to person. It is important however to know what can happen so we take this seriously to prevent its progression. Ik it can be tough at times but remember you are worth it, advocate for yourself, if a doctor is not working out, go to the next. Do not stop until you find the right doctor for you. Be kind to yourselves, we didn’t ask for this and all we can do is treat ourselves as best we can until they find better ways. I have so much hope that there will be better ways to treat this in the future. Until then all we can do is treat and manage. Sharing some positive stories in the comments could be a big help to new comers! Or if anyone has any questions about my treatment or anything like that go ahead and ask! Also remember Meghan fox and Heidi Klum have this and advocate for it all the time.

I hope this is okay to post. I reached out to the mods a few weeks ago to ask permission but never heard back.

I have vulvar lichen sclerosus myself, and after years of trying lubricants that either irritated my skin, seemed to trigger infections, or contained ingredients I wasn't comfortable using on already compromised tissue, I became frustrated by how few options there were. I also learned that many conventional lubricants are hyperosmotic, meaning they draw water out of vulvovaginal tissue which causes dryness and irritation. So I decided to create one myself.

Over the last couple of years I've worked with formulators to develop a water-based lubricant specifically for sensitive vulvovaginal tissue. My goal wasn't to make another "luxury" lube - I wanted something that wasn't just less likely to cause irritation, but was intentionally formulated to help support the skin barrier and delicate vulvovaginal tissue.

I'm now at the point where I'd really like feedback from the people I made it for.

I'm looking for women with diagnosed vulvar LS in Canada who would be willing to try a complimentary bottle and give completely honest feedback. I'm not looking for glowing reviews or testimonials - if you don't like it or if something could be better, I genuinely want to know.

There are no strings attached, and I'm not asking anyone to post publicly. I simply want to learn from other women living with this condition so I can continue improving the product.

If you're interested, feel free to comment or send me a DM.

PS - I've been using it for about two years now without issue. It will sting if I have tearing in an area or if I'm in a flare but literally everything stings if I have tearing or I'm in a flare.

PPS - This isn't some random thing I make in my kitchen. It's manufactured in a registered facility and formulated by a formulation chemist and has been third party tested. It's water-based, pH matched, iso-osmotic, made with minimal ingredients and has sodium hyaluronate and aloe for extra soothing and hydration.

Thank you ❤️

People who have had children- I have constant tearing at the opening. So much so that it tears Everytime I have sex. I’m considering pregnancy and wanted to ask about experiences with or preferences on natural birth vs C-Section. Thank you!

Long story!

So over this I’ve literally never had ANY health issues until recently.

I’m a 35 F . So my SO got an infection of some sort ( we think it was from unprotected anal sex cause they’re was some material tmi sorry) he got tested for UTIs & STDs and negative . We think it was prostistatis so did his doctor so he took antibiotics . Anyways we had sex without protection, and a week later I had a truly horrible yeast infection and UTI (coagulase-negative Staphylococcus) its a skin one I guess. So I had antibiotics and diflucan x 3 it was stubborn , and my symptoms were finally gone 1.5 weeks later. We had sex again 2 times and everything was fine and the third time 2 hours later I was burning down there. I waited a day or two it didn’t subside so I went to the doctor and they tested me incase the yeast came back. I was negative for yeast and UTIs. Went to Gyno this time it was her PA and they said maybe it external so prescribed me a antifungal/steriod which didn’t work and I felt burned me worse. So I went back to Gyno and she said you have some discoloration (it’s not patchy or raised and looks underneath the skin and just when stretched and I think it’s always been there to be honest) she said she thinks it’s L/S here is Clotbeta cream if it doesn’t help in 2 weeks we will do a biopsy. I feel like the events or symptoms just don’t make sence for LS. Also my fiance and I were doing bug spray cause of a ant infestation and he developed a rash in his groin area which we contributed it to but now he said he got little bumps on his legs too like follicitus. So I don’t know what the hell is what. Could his semen just been irritating my already irritated post yeast infection skin I do remeber him rubbing all over the area after and that is bothering me upper vulva and above my urethra area or AV ? Or is it L/S and all this is just coincidence! ? It’s been 2 weeks since it started 1 month after yeast infection.

Only symptoms before and after yeast infection I’ve had is burning sensation. I’ve maybe had itch but never to the point I had felt it necessary to itch

Help :(

Is itching inside the vagina common with lichen sclerosus?

I still have so many questions about what’s normal and what’s not with my LS. Does anyone else get a burning sensation in their vulvar area, both labial and around the clitoris for no reason?

Was just at the GYN and do not have any infections. This happens pretty regularly and causes discomfort/pain. I don’t really know what to do to alleviate it

hi all, i suspected i had LS and finally went to get checked. The GP referred me to a gyno who is going to do a biopsy. Thankfully GP said they didn’t think it was sinister but does think it’s LS.

What should I expect at the biopsy? I quite nervous and feel a bit shy about undressing but I know it needs to be done and the GP was so kind

I know LS isn’t curable, but if you start clobe and follow the instructions etc, does it just mean your symptoms are manageable and the skin doesn’t change further, but you’re still left with the same appearance when you started?

I.e if I have white patches right now, will i always have white patches, it just may not spread further?

I have been using clob for 3 years after a gyno told me I had LS (no biopsy but everything checked out since childhood). I have had insurance issues, been pregnant, and so forth and haven’t checked in on my LS with a specialist but also haven’t really had flare ups or symptoms since starting the clob so I assumed I was at least in remission - needless to say this was super disheartening to get my annual and my doctor says “this is really bad lichen my friend.”

I guess reality set in that this is just a lifelong, advancing disease? Not really sure if this is a vent or asking if anyone has been through something similar but feeling very disheartened. I actually can’t believe the doctor said “this is really bad” and thought throwing “my friend” on the end would lessen the blow!?

This is my second post after finding this subreddit. I’ve appreciated everyone who responded to me! But I need to rant, I feel like I have no one in my life who has felt this pain? Im 19f- I came home tonight after work, showered per usual. And instantly felt alot of pain in my vagina and my vaginal opening. I dried myself off and decided to look down there. I’m super irritated. Way worse than the last couple weeks. I feel like this is getting serious and I’m very scared. I wish I could just say this is another yeast infection. But it hurts 10x worse. I’ve been putting on this external vulvar cream. (Miconazole nitrate cream)I got it for my last yeast infection. I wouldn’t say it’s helping- but it makes me feel less tight since it’s adding some moisture that I’m very much so lacking. I do this once nightly. But all in all, I’m scared and worried. I’m not looking at google or symptoms, but I’m in pain and it’s scary. I want to go to the gynecologist so bad. But I know my appointment isn’t for a couple weeks to a month at best. I may need to find another one. Anywho rant over. If there are any woman in here who have better remedies that can help the pain, tightness, cuts- etc. please let me know what they are! I’ve heard people say coconut oil but is that safe to put around my vaginal opening? I definitely just need advice and safe products to use while I wait on seeing my doctor!