(23F)I’ve been using clobetasol for almost a year now since my diagnosis and have taken photos to track changes. My labia minora are now about twice as small as they used to be, and they almost slip out of my fingers when I try to hold them.

I’m unsure if this shrinking is due to the atrophy caused by LS or the clobetasol itself. The itching and irritation have mostly been centered between my labia minora where the shrinking happens. I apply it for months when ok a flare until symptoms go away and the. Keep maintenance. I have changed drs multiple times and find very little relief from time to time.

This situation is really affecting my mental health, and I feel so defeated. How can I stop this from getting worse? Has anyone else experienced this? What has helped? I would appreciate any advice

I was googling LS (looking for a book actually) when I noticed a headline that read: What is the new treatment for LS? I clicked it and it directed me to this article: https://dermsquared.com/news-research/hydroxychloroquine-safe-effective-treatment-for-anogenital-lichen-sclerosus

Sounds interesting.

I haven't heard this medicine before (Hydroxychloroquine), so wanted to pass it on here in case someone has more info.

And when did you get diagnosed or how long after your symptoms? And did you reverse any damage? And how old are you :)

So I received a lichen sclerosis diagnosis 2 years ago after a month of pain and cracks under the head of my penis. The possible cause was trauma received from a sex injury.

I've been dealing with it okay using steroid ointment and stopped using the steroid ointment transitioning to another non steroidal ointment. But in one area under the head of my penis this particular spot keeps on breaking skin. No matter what.

A big piece of skin fell off which prompted a whole month of pain and redness. I got every test known to man to rule everything out. The doctor told me to wash it lightly and use the ointment that it was prescribed. That kind of helped the area healed. But they also gave me a referral to a urologist to talk about circumcisions.

My dermatologist and my urologist don't want to give me a circumcision because of the risks involved but the urologist says that that spot would probably be cut off. He doesn't want to do it because even though the spot might be cut off. He said that the risks might be greater than chronic skin falling off?

Is there anyone on here that had great success with circumcisions and treating lichen sclerosis?

My wife was told she had LS by her gynecologist and was proscribed the Clobetasol ointment which helped the condition some. After about a year of no relief I urged my wife to check with her dermatologist for a second opinion. After a biopsy it turns out not to be LS but a condition called Vulvar Carcinoma In Situ (VIN 3).

Vulvar Carcinoma In Situ (VIN 3) is the most severe form of vulvar intraepithelial neoplasia (VIN) and represents a pre-cancerous condition. It is sometimes referred to as high-grade squamous intraepithelial lesion (HSIL) or Bowen’s disease of the vulva. It is not yet invasive cancer, but if untreated, it can develop into invasive vulvar carcinoma over time.

What Does VIN 3 Mean?

   •   VIN: Refers to abnormal changes in the skin cells of the vulva.    •   3: Indicates the highest grade of VIN, meaning that abnormal cells occupy the full thickness of the epithelium (outer skin layer), but they have not yet invaded deeper tissues.

Causes and Risk Factors:

1.	Human Papillomavirus (HPV): Particularly high-risk strains like HPV-16 and HPV-18.
2.	Smoking: Increases the likelihood of VIN progression.
3.	Weakened Immune System: Conditions like HIV or immunosuppressive therapy can heighten the risk.
4.	Chronic Skin Disorders: Conditions like lichen sclerosus or lichen planus.
5.	Age: VIN 3 can occur at any age but is more common in younger women (20s-40s).

Symptoms:

VIN 3 may not always cause symptoms, but when present, they can include:    •   Persistent itching or burning.    •   Pain or tenderness in the vulva.    •   Changes in vulvar skin (thickened, discolored, or wart-like growths).    •   Ulcers or sores that do not heal.    •   A lump or patch of abnormal skin.

Diagnosis:

1.	Physical Examination: Visual inspection of the vulvar area for abnormal patches or lesions.
2.	Biopsy: A small sample of tissue is taken and examined under a microscope to confirm the diagnosis and grade of VIN.
3.	HPV Testing: Identifies the presence of high-risk HPV strains.

Treatment Options:

The goal of treatment is to remove or destroy abnormal cells while preserving as much normal tissue as possible. 1. Surgical Options:       •   Wide Local Excision: Removal of the lesion along with a margin of healthy tissue.       •   Laser Ablation: Uses a laser to destroy abnormal cells, typically for smaller lesions. 2. Topical Treatments:       •   Imiquimod Cream: A topical immune response modifier that helps the body fight abnormal cells, effective for some cases of VIN 3. 3. Non-Surgical Approaches:       •   Photodynamic Therapy (PDT): Involves applying a photosensitizing agent and exposing the area to light, which destroys abnormal cells. 4. Observation:       •   In selected cases, closely monitoring the lesion may be appropriate, particularly in younger women or when lesions are small and asymptomatic.

Prognosis:

VIN 3 is a pre-cancerous condition, so treatment is typically highly effective in preventing progression to invasive vulvar cancer. However:    •   There is a risk of recurrence after treatment, so regular follow-up is essential.    •   Long-term monitoring is necessary, especially for patients with HPV or other risk factors.

Prevention:

1.	HPV Vaccination: Vaccines like Gardasil can protect against high-risk HPV strains.
2.	Quit Smoking: Reduces the risk of VIN and its progression.
3.	Regular Gynecological Exams: Early detection of abnormalities increases treatment success.
4.	Manage Chronic Conditions: Proper care for vulvar skin disorders like lichen sclerosus.

VIN 3 requires careful management and close collaboration with a gynecologic oncologist or specialist to ensure effective treatment and long-term monitoring.

So! I've been getting Brazilians for a couple months and I love how smooth and non-itchy it helps me feel, and my waxer is actually the person who pointed out that I had a lot of scarring on my vulva where my labia minora used to be. I really owe her for making me aware or else I'd never have gone to the doctor about it before my clit was already gone.

Anyways, besides that, I heard that waxing isn't good for LS because of the damage it might cause but that Lazer hair removal was a much better option.

I just got a coupon for 60% w/ black Friday sales happening so I jumped at the chance and got 6 sessions! I'm so excited but I wanted to doubke check, Lazer hair removal is safe and fine, right?

The most common treatment for Lichen Schlerosus is steroids. Steroids thin the skin overtime and can cause complications with extended use. Lichen Schlerosus also thins the skin and basically damages it overtime. So my question is, why use steroids which thin the skin on a area of skin which is affected by Lichen Schlerosus. I understand it reduces the inflamation, but it wil also cause more damage to already damaged skin. Does anyone else have these same concerns and if so how often would you use topical steroids?

Also, does anyone know if there is any new treatments coming out or promising research, for treating our unfortunate condition?

Thanks for your time!

I had some spotting in my underwear initially I thought it was vaginal bleeding but then discovered it was rectal. I'm chronically constipated (often 8 days+) however I haven't tried to have a bowel movement. I have mild LS or at least it's very controlled, could this be a random symptom or should I seek medical help? (It's red blood and spotting in my pants and if I blot my anus)

Doctors don’t care. It’s time I take matters in my own hands. I have skin peeling around clitoris for years. Super itchy. And then my vagina has a cut on the posterior couchette. Pls help

I’ve been trying to get an appointment with my primary care provider or my gynecologist but they both seem to busy to even help. I was told to use the clobestal steroid cream but since I have clitoral adhesions instead do I use that on the adhesions too? I also don’t know how to check for any scarring but my lips still open/vulva. My skin is very red and pale I guesss my lips are discolored before they were really dark. I don’t know how to tell if my labia has disappeared or not. But if I do happen to have any scarring because of the narrowing of my vagina opening/canal and the adhesions can it get better? I have no blood flow or arousal anymore. haven’t had any moisture for almost a year either. nothing is flexible or elastic either. I also have to push to pee and like can’t go pee any other way… I went to the doctor for it last month. they told me to come back this month. I do have weight issues like I’m 83 pounds so I’m sure that hormones have something to do with having LS given that I’m only in my 20’s. not even close to menopause yet. I kept telling myself it’s probably just atrophy this whole time like vaginal atrophy and clitoral atrophy . But I can’t retract my hood all the way so it’s not clitoral atrophy and the fact that the vaginal narrowing and other symptoms started at the exact same time as the adhesions all together just makes me suspicious overall . I also read that it can cause pelvic floor dysfunction which I have…

For those of you that had visible redness (no white) how long using clob did it take to go away?

It bothers me and makes me feel abnormal 🙄 I’m a little over 2 weeks in and sometimes I notice it’s dying down other times it’s red again.

Thanks🫶🏼

Hello all 🤗. It’s the 1st of December 🎅🏼 so you know what that means? Time to check your bits 🌮, and bobs🍆 and don’t forget the 🍩

Details on how to do a proper vulvar self exam are here

https://www.lichensclerosus.net/suggestions-tips/self-exam/

Wishing you a healthy and symptom free December 🎄 ⛄️

I value this subreddit tremendously and everyone who participates. Thank you for sharing your struggles and wins.

Much Love. Nettie 🤶

I’m wondering if anyone else here has piriformis/sciatica? I’ve been struggling with it for years and am trying to learn more about LS, sciatica and connection to pelvic floor muscles.

I don’t really know what my question is. Just curious if anyone else has got/had both and found a solution? I’m in a bit of despair…

Hi, I never had pain or itching really before the doctor diagnosed linchen sclerodus. Since then I have started the treatment and it was on, but some pain started.

Now the last week was awfull and I am continously putting ointment but it does not seem to help.

Could it be that clob caused this? i am getting a little desparate from nothing to now pain. Anyone experienced the same?

My dx story: I had a cyst next to my vulva that would not heal for 3 years (turned out to be HS). I finally found a urogynecologist surgeon who took me seriously and said she’d perform surgery. While at my first appointment, it took her less than 5 mins to assess and told me it looked like I had LS. I had experience a lot of other symptoms, but I assumed it was related to my cyst. Symptoms included itching until I bled, white perinium, white spots, dark coloring on vulva.

Thankfully, she performed biopsies while under general anesthesia and I was dx in early September (those biopsies hurt more than my surgery btw lol). 2 OBGYNs prior to this completely ignored my signs and symptoms. This was horrible because my entire labia minora has fused. How the hell does a doctor miss that? I’ll never rely on a male for ANY gynecological treatment again.

I started clob in October and finally started noticing differences this week! No more itching, no more tearing, no more pain. My perinium looks completely normal for the first time in 3 years. Sex is back to normal, although I still deal with urethra pain after intercourse but it’s not that bad. My vulva is still darker in color but it probably needs more time.

I do notice a flare starting if I use a lot of toilet paper (a peri bottle changed my life) or if there’s chafing or sweating from exercise. I apply aquaphor at the slight sense of a flare (feeling like cuts).

Anyway, I just wanted to say it can and will get better. It stung to apply clob during my flare but it was 100% worth it to go back to normal.

This disease and all the life changes can be very scary and stressful. I hate the feeling of being out of my control. But trust the process and do what you can to help yourself heal!

I have clitoral adhesions and suspect I’ve had it for a long time. I’m in the process of getting diagnosed with LS (waiting for my biopsy results but the doctor is almost positive I have it). I have never been able to enjoy sex or even get remotely close to orgasm. I can however orgasm ONLY with a hitachi wand in a specific position. The orgasm itself is not very enjoyable and short lived.

So I am just wondering, is anyone else in the same boat as me? Once you were able to fix the adhesions and LS pain were you able to actually achieve orgasm with your partner? This has been one of my biggest insecurities in my relationships because sex is just not enjoyable for me.

Thank you.

Long story short, just got a suspected diagnosis. I am in the UK and the GP told me that is what I have and are referring me to a gyno but said it will be a long wait for an appt to get it confirmed. They prescribed me Betnovate RD Cream (0.025%). Everywhere I am reading people talk about Clob and then I see that ointments are better than creams. Overall the GP was unhelpful, it seemed definitely out of her wheelhouse so I wonder if she is even giving me the right steroid cream? Should I be calling her to get it changed?

I never thought this was possible, but I have LS on my lips. Apparently it is more common with a cpap because of the irritation. If you have LS and a cpap, moisturize your damn lips.

Has anyone tried using Benadryl cream for their LS itching? I've been trying to avoid using the clobetasol cream (the skin is already pretty thin & it doesn't seem to be helping as much as it has in the past). I cannot tolerate anything estrogen (to thicken the skin). I've only used one application (started this afternoon)...so jury is still out on any longer term use...but so far, so good with it's very limited trial...

Hi everyone. I have a question regarding can I put clob on the vestibule? When having intercourse I have a burning sensation, which I believe is the vestibule that’s burning.

I’ve recently been diagnosed with linchen sclerosis via biopsy after 8 months of intense pain itching and burning with a red vulva. My dermatologist thought it was eczema and I had already tried other less potent topical steroids which did nothing and also Tacrolimus which helped only slightly. I started clob 2x a day every day for the past month but symptoms have not gotten any better. Sometimes I think I’m getting a little better and then it gets really red again and the pain is unbearable. My question is, is this normal does clob take longer to start working what if it never works will I be in constant pain every day for the rest of my life?

I will be seeing a doctor about this but want to see if anyone else has had a similar experience. I'm 4 weeks postpartum and pre pregnancy have been visually diagnosed with LS over 5 years ago. My only symptom was itching on outer left labia and in a recent visit to a vulvar specialist dermatologist, the doctor said that there are some very small white patches although subtle around perineum and anal area. I'm awaiting biopsies once recovered from birth (likely to be in Jan) for diagnosis. I use Dermovate twice a week. I had tears on both inner labia after birth and stitches on one side and since then I've noticed the inner labia has shrunk on both sides, it looks much thinner and is not as prominent as they used to be. Nothing looks fused and my clitoris is very much still there, but labia just looks very different to what I'm used to. I am breastfeeding currently and wonder if this could be an LS related issue or whether this is hormonal due to birth - I've read experiences of women without LS having smaller labia after birth, but worried this is to do with my LS. Has anyone with LS experienced this and it be due to hormonal changes after birth rather than LS, and if so did it ever go back to normal.

Hi everyone! I have a question about lubrification, I will never be able to have sex without lub? My natural lub will never be the same

I miss feeling the moist sensation.. is it gone forever?

Thanks and sorry for the vocabulary, idk how to express this well

Hi everyone. Have been hovering for a while, firstly just a huge thank you for everyone who is super friendly and supportive to all us newbies!

I’m awaiting diagnosis (have to wait another 2 weeks still, just to see a GP 😩). I’ve done a lot of research (and obvs scared myself but taking it with a pinch of salt)

I first noticed last week that the whole of my labia minora is white/grey. It’s not in patches, it’s not shiny, it was itchy (which is how I first noticed it), but now it’s not. I thought that was my only symptom, but have realised recently that I tend to get very sore after sex for years but never thought anything of it before.

Anyway, I’m concerned about the colour and the coverage - I think it looks diseased and awful 😩 if it is LS, and it’s treated, will it ever go back to pink?? I feel very self conscious about it. I’m sure it’s changed colour in the last couple of months or less. Should I be alarmed at the rate of the colour change?!

Any help appreciated, thank you 🙏

I’ve had recurring yeast infections my whole life and now I know it’s related to this condition it makes more sense. But my question for you is what regimen for dealing with it has worked best for you?

I’ve had many doctors recommend different things throughout the years. Monistat cream, diflucan pills, eating yogurt, wearing breathable cotton. But they keep returning.

I have some newbie questions… please answer any or all :( Thank you from the bottom of my heart. Hugs to you all.

1. I’ve had severe tearing for years, but no major itching. I’m 25… will I likely develop itching as I age? Or do some women not itch that much?

2. Do you still have a sex life? How? I have been feeling so down about my worth as a woman. My boyfriend and I do it all by the book with proper lubrication, foreplay, and extreme gentleness but I still tear 100% of the time. Will I ever have a normal sex life?

3. Please help me understand if/how LS progresses. Do these tears heal back tighter? What causes the “fusion” exactly? Anything I can do proactively? I have a great OBGYN but I still am struggling to generally understand exactly what to expect in the future.

4. I recently found out my maternal grandma and her maternal grandma have/had LS. Is it hereditary?

5. Should I be scared? What age were you diagnosed? I am so terrified because my great-great grandma died of LS-related cancer of some kind

Hi there. I’m a 36 yr old female recently diagnosed with LS and given steroid cream to use twice weekly. I don’t have any pain just discoloration. My dr didn’t do any sort of testing just said that it looked like the beginning of LS. I was caught off guard and didn’t think of questions to ask. Will the steroid cream prevent worsening since it was caught early? Will I need to use it forever. Any feedback would be appreciated.

I just got diagnosed at 21. they said it’s very early. be brutally honest please and let me know if my life is over. thanks🤠❤️

Hi everyone, I’m hoping to get some advice and opinions from people who have gone through something similar.

I’ve had recurring yeast infections (or what I thought were yeast infections) for about four years now. They never really went away, it’s like they would calm down but they were always there and would reappear every so often. I tried everything in the book, went to doctors and all they said was that I have chronic yeast infections and to take fluconazole and immediately drink probiotics (which didn’t help).

Lately I’ve been realizing that anytime I thought I had a yeast infection or BV, I never had any suspicious discharge. I would just get these shiny white discolourations on my vulva around my labia minora and that what would itch like crazy. I’ve also had very bad pain with sex over the last two years which didn’t happen a few years ago at all. It almost feels like the bottom part of my vaginal opening is tearing, and sometimes I’ll be bleeding after because it did tear. I thought it was a lubrication issue but a few years ago I could have sex without any lube and I had zero pain at the opening whatsoever. Now no matter how much foreplay there is and how ready I am and how much lube is used it feels the skin around my opening is tearing every single time. It usually stays sore for a while so I can’t have sex for multiple days afterwards. It almost feels like there’s skin at the bottom of my opening that’s covering it that was not there before, or that it just no longer stretches. Sometimes the pain isn’t as bad, but it’s always there. And sometimes the discomfort and itching will go away for a while and then come back.

I’ve been doing my research on this and honestly I’m terrified. I’m going to see a gyno soon, but I’m worried they’re just going to dismiss it again because I’m young.

I also know there have been studies that show that a gluten intolerance can worsen the symptoms of ls so I’m going to try and cut down on gluten and see if that helps. Im also inclined to see a naturopath or holistic doctor. I think that since this is autoimmune (if I receive this diagnosis) that it may be connected to a root of many other problems because I already have very sensitive and inflammatory skin that actually flares up depending on my diet.

Any advice or words of support would be very appreciated.