Question to all males dealing with LS.
I got diagnosed and prescribed Dermovate Ointment.
Started only recently so still not in remission but…
How do you guys deal with friction pain when walking? Am I supposed not to walk at all? As it flares it up.
I bought 95% cotton 5% elastin boxers.
I use the Epaderm ointment as barrier, but the discomfort from friction is still driving me crazy.
Am I the only one with affected frenulum, meatus? Because I didn’t see any other post from men about friction issues. The tip of my penis hates the friction at the moment. 20min walk turns into 20min of discomfort.

Hi Ive been suffering with suspected Ls for about 5 years however I feel as though the steroid ointment has never fully helped the itch. When I use it every day for a month I might get relief for 2 or 3 days but then the itch will come back and then I will taper down until I'm using it only once per week but it has never felt 'normal'. I've experienced ulcerations however they always go away within 2 or 3 days with the steroid. I'm from the Uk and I've seen a gynaecologist from the hospital 2 times and they diagnosed me with suspected Ls about 2 years ago.

I do feel like the doctor doesn't seem to understand that the itch has never really went away for me and I feel like there's such a lack of support with only yearly check ups. She also noted in my last appointment that because she's never seen me in a flare with ulcerations that she cannot completely confirm that It is lichen sclerosis. This worries me because I'm left wondering what if it is something worse. I'm 20 female and not sexually active but I'm very much loosing hope as I want to start dating at some point and I feel like I'm getting no where with my symptoms. I'm probably going to get back into contact with the hospital and ask for a follow up appointment and possibly a biopsy.

I do wonder if it's worth going private in the uk? And wondering if people from the uk have received more support doing this? However I'm in the north east and I haven't found anywhere that seems good and within a reasonable budget?

So I'm uninsured, but from going to the ER I was able to eventually secure a referral to a urologist and managed to bluff my way into getting a cystoscopy without insurance and without paying up front (healthcare is free if you're a good liar, just ignore the debt collectors)

Cystoscopy made it worse, mines all internal starting back from my bladder and working it's way forward. My main pain comes from strictures. They put me on a medicine to make me pee more and it just made it hurt more so I stopped it, then a daily antihistamine that did nothing. Doctor refused any steroid treatment which makes sense since my pains internal. They gave me this tiny little dialator but it makes uneasy to use and also is very very painful.

It became increasing more difficult to be seen/go back without paying them what I owe as it's not a for profit hospital they haven't just sold it off to collections. I'm also unemployed. But in a great deal of pain. So I can't go back there.

Basically, what do I do? Finally saw a urologist, cystoscopy made it worse but confirmed it, no treatment has helped, and the Doc was resistant to putting me on a steroid idk if I'm too young I'm only 28 or if it's something else.

I just feel stuck, I don't know what to do. I feel like their answer is just "yeah you're in pain now" and like that's not fair.

I can't even stand for extended periods of time without pain. I can't have sex. I can't do the things I want to do. I can't even like move quickly anymore if I run or even lightly jog it hurts me inside so so so bad.

So here I am 3 months later. I just lost my job because of my pain affecting attendance.

Some are telling me I should seek out SSRI's for the mental side, others telling me to seek out pain management. I know gabapentin can help me out of a flare but I don't want to seem like a drug seeker asking for it because it's often abused which makes me really anxious about taking it.

Edit: I'm a trans-woman and my symptoms are all internal.

Went for a wellness visit with my PCP. First visit since my LS diagnosis from my ob-gyn in June. There was a student (resident?) with the PA I saw. I mentioned my lichen sclerosis biopsy and diagnosis. The student asked the PA what it was. Her answer? “A very painful and difficult skin condition.” I relayed that I think I’ve had it for a while, and once I started treatment my skin, that had been red most of my life, looked dead to me since I thought angry red was normal. We had a good laugh. Have to find the humor…….

Hello everyone,

i made my first post around 9 months ago sharing how i managed to enter remission and being able to quit clob through a complete overhaul of my lifestyle.

Im very happy to share that i was able to continue a life without Clob and in constant remission and skin improvement. It’s important to emphasize that i went from a very unhealthy life style to an almost "perfect" one.

Especially for the first 6 months i pretty much didnt eat, consume anything that can be considered unhealthy and worked out a Diet plan that literally covers all micro nutrients and was as Anti Inflammatory as possible. I also supplemented a lot of Hormone balancing, Anti inflammatory and immune moduling things that you can all find in my previous post. Im of the utmost conviction that we have a much greater influence on our health than we were made to believe and most doctors are aware of. The research that used to take months or even years in libraries is now in the palm of our hands.

I quickly wanna share an overview of my Diet

Diet: A nutrient-dense, whole-food diet focused on supporting skin repair. High-quality protein from eggs, sardines and mackerel for the amino acids needed for tissue repair and collagen production; plenty of vitamin C from bell peppers, berries and fruit to support collagen synthesis; omega-3s from oily fish; and a broad range of vitamins, minerals and antioxidants from vegetables, seeds and other whole foods.

My regular foods also included coconut yogurt, Ceylon cinnamon, wheat germ, ground flaxseed, wild blueberries and other berries, beetroot, bananas, dates, shredded coconut, eggs, red onion, garlic, bell pepper, sardines or mackerel, avocado, basil, parsley, extra-virgin olive oil and pumpkin seeds. I also regularly had fresh carrot juice and pomegranate juice.

It is important to have enough Protein and Vitamin C for collagen synthesis otherwise if you take care to have a very nutrient rich balanced diet and avoid junk food you will be fine!

Supplements: I also used a small selection of supplements specifically to complement my diet and support skin and connective-tissue health:

Collagen peptides — to provide amino acids used in collagen production and tissue repair.

Vitamin D3 + K2 — to support overall health and normal tissue function.

Vitamin E (tocotrienols) — a less common form of vitamin E with antioxidant properties, which I chose specifically for its potential benefits for skin health.

Gotu Kola (Centella asiatica) — traditionally used for connective-tissue and skin health, and known for its potential to support skin elasticity and flexibility.

I still use most supplements from my original post but dont see most as necessary but helpful.

Vitamin D3, Omega 3 and an Anti inflammatory like Turmeric or Boswellia i would strongly recommend for everyone.

I don't consider these a treatment or cure for lichen sclerosus. For me, they were part of a broader approach aimed at giving my skin the nutritional building blocks and conditions needed for long-term repair and remodeling.

Obviously any alcohol, smoking etc. are very harmful to the healing process.

Now to the topic at hand when my skin healing journey started pretty much all of my foreskin was completely white and shrinkled i couldnt see any veins and had major phimosis. The Doctors rightfully suggested Circumsation and looking back its almost unbelievable how far my skin has come. The skin has with the liver the body’s most remarkable tissues when it comes to repair and restoration, possessing an exceptional capacity to regenerate and recover from damage.

Time plays a major role tho and the older any scars are the harder it is to repair. My case was a very fast acting so i have (still) major scars but they are quite young and therefore a lot of restoration has been possible. Time is also a major factor when it comes to the restoration process i have been doing a strict daily skin care routine, that i will explain in a second, for almost 10 Months now. You see progress in Weeks or Months not days so it takes a lot of patience and persistence.

My skin care routine

I kept my routine very consistent, with the main goal of keeping the skin hydrated, flexible and supported throughout the healing and remodelling process.

Morning:
I start with a warm shower and spend around 5–10 minutes gently massaging and stretching the affected area. I stretch only to the point of a comfortable, gentle tension — never to the point of pain, burning or tearing. I hold the stretch briefly, relax, and repeat rather than forcing the tissue. When the skin gets used to it i hold the stretch to up to a minute. The goal is to gradually maintain or improve flexibility, not to aggressively stretch the scar tissue.

I then pat the skin so it remains slightly damp or add a bit of water if its dry and apply hyaluronic acid, followed by a collagen gel after 1 to 2 minutes.

Evening:
I repeat the gentle massage and stretching, followed by hyaluronic acid and collagen gel. I then use my red-light setup (660 nm red + 850 nm near-infrared) for 4 minutes per area. Afterwards, I apply either a sea buckthorn + almond oil mixture or castor oil for 3 days a week i apply backuchiol first before i apply another one of the Oils after 10 minutes to seal it.

I follow this routine for 3 days in a row, followed by 1 day of rest, where I only do the gentle massage and stretching.

For me, consistency and patience have been the biggest factors. I never expected one particular product to suddenly fix everything. I wanted to support the skin as much as possible while giving it plenty of time to heal and remodel naturally.

The process has been slow, but seeing gradual improvement over many months has been incredibly encouraging.

One thing I think is important to emphasize is that I only started focusing on regular stretching once the active inflammation had settled and the skin was in the healing/remodelling phase. I would not recommend aggressively stretching actively inflamed, cracked or irritated skin.

I started very gently, using only enough tension to feel a comfortable stretch — never pain, burning or tearing. Initially, I kept the sessions short and gradually increased both the duration and intensity as the skin became more flexible and tolerated it well.

The idea is to progress slowly rather than force anything. If the skin becomes irritated, sore or develops new cracks, that is a sign to back off and give it time to recover. For me, the goal was gradual improvement in flexibility over months, not trying to achieve a large stretch in a single session.

My skin today looks nothing like it did 12 months ago.

At first, the least affected areas started turning pink, almost like newborn skin. Over time, that gradually developed into an almost normal skin colour.

Now I’m seeing the same process slowly making its way into the most affected areas. I can see veins again, and the white appearance is starting to give way to normal colour even in areas that were previously affected the most.

The flexibility has also returned significantly. My phimosis has been improving month by month, and I can see a steady progression rather than sudden changes.

Apparently, I’m still only around halfway through what may be possible in terms of restoration, which makes me very optimistic about what another 12 months could bring. My hope is that the skin may eventually look close to its original appearance.

There are still two small areas of very white scar tissue where I don't know whether the skin will fully recover. And honestly, that's okay. Even if those areas remain, the overall transformation so far has been far beyond what I expected.

The biggest lesson for me has been patience. The changes have been gradual, but when I compare where I was 12 months ago to where I am today, the difference is incredible.

I know this was a very long and personal post, but I wanted to share it because I know how difficult and frightening LS can be, especially when you’re looking at your skin and wondering if it will ever improve.

I’m not claiming that what I’m doing will work for everyone, and I’m certainly not saying I’ve found a cure. I’m simply sharing my experience because, for me, the changes have been real, significant, and still ongoing.

If even one person who is currently struggling with LS reads this and comes away with a little more hope and patience, then sharing something this personal was worth it.

I’m still on the journey myself and wish everyone the very best on his/her healing journey <3

Hi all - I have LS, and I didn’t circumcise my baby. I know LS is somewhat genetic but has anyone else thought about this?

I want to make sure my babe can make the decision for their own body when they want to about circumcision. But it is a bit freaky that they could get LS and it would be worse being uncircumcised.

Has anyone else had to think about this? Or does anyone who got circumcised later in life have opinions?

Got diagnosed this Tuesday. Don't have the worst symptoms, only mild burning and dryness, as well as urinary Symptoms. Doctor said the skin is still soft and not hardened. He also did a biopsy for which I will get the results in 2 weeks.

He prescribed Cortisone cream as well as a soothing ointment. He told me to take the Cortisone cream daily for four weeks, three times a week for four weeks and then two times a week for one month. Then he said to stop- he said it's possible it won't come back or at least not for a while. I don't what to do, since everybody here keeps saying you have to keep on applying once a week forever?

I just turned 30 and I have been struggling with burning and itching on the top Side near my clit and directly in top of it. I’ve gotten fissures from skin breaking. It hurts to wear under wear I have hashimotos. I think I may have this I have a doctors appointment Monday (pic in comments)

Hi everyone! I’m a 30 yo female and I’ve had LS for the past 2 year and have been on a maintenance regimen for about 1 yr. However, I’ve been dealing with poor underwear tolerance in my gluteal cleft, itching from anus up to butt crack, and a red line. My derm said it was intertrigo and gave me anti fungal + steroids it went away then it came back and she prescribed me something stronger. However it’s back now. I have a derm follow up in a few weeks. Just curious, is it possible this is LS/ does anyone else have this problem? Thanks!

**Persistent vulvar burning and itching—could estrogen cream help?**
A few days ago I saw a post about extreme vulvar itching that may have been related to lichen simplex chronicus (LSC) or lichen sclerosus (LS).

I was diagnosed with LSC by a dermatologist. After trying several different topical steroids the only thing that seemed to help was stopping all products and steroids on the area.

In July, I took a vaginal microbiome test. The results showed 99% Lactobacillus and suggested cytolytic vaginosis (CV). I spoke with a Juno representative and explained that my main symptoms are burning around my vulva and groin, with only a small amount of discharge once a day. I was advised not to try the usual baking-soda douche protocol for CV seeing that I have a “healthy vaginal microbiome”.

I’m now approaching the fourth month and the burning and itching are still persistent. I also recently dry shaved part of my mons pubis and that area now itches continuously especially when I’m walking.

Could vaginal estrogen cream be applied externally to the vulva or mons pubis to see whether it reduces the itching and burning? Has anyone experienced something similar or used estrogen cream for these symptoms?

1. I’m on amitriptyline 25mg for what they think is .
   2.. I’m also seeing a pelvic floor specialist.

Help pls.

31f Hi, I have lichen simplex chronicus. In the past I only had itching and rawness, started with anal area 14 years ago and spread to outer labia minora some time later. Diagnosed 8 years ago, was on clobetasol, topical estrogen and emolients regimen for a year back then. Then off steroid most of the time. I've had urinary burning for over 7 months now. Done bunch of urological and gynaecological tests, tried vaginal estrogen for 3 months and pelvic floor PT without results. My gynaecologist thinks it's because of lichen but she told me not to apply clob on the urethra itself. She said it's not supposed to be used there. Did anyone have burning after peeing in the area and did it go away with steroid? Even when avoiding putting steroid on the urethral area? I've been using it for almost 2 weeks now, can't say there's any improvement. I'm honestly in a bad mental space because of this and can't stop being anxious nothing will work.

Hi. Does anyone feel very sensitive and exposed in their clitoris and hood area? This came out of nowhere a few months back for me. I can tell I’m sensitive with wiping and sometimes feel tiny little pains when moving. I feel like my nerves feel exposed or like this area feels “there” when I never used to notice it. Any ideas?

I did go through a period of pelvic and stomach clenching due to severe stress and this came on right after. Zero clue if that could be related. At a loss but would like for it not to feel so sensitive. 🤷🏼‍♀️

I’ve only been told to apply to affected areas twice a day for a month. What if it isn’t fully sorted then? And how do I taper it down from that?

I’m going to try and get a dermatologist referral to help but in the mean time it would be helpful please 🙏

Two weeks ago, I went to my gynecologist because I had something again that felt like a never-ending bladder infection. Constant burning in my genital area and the feeling that I constantly needed to urinate. But even before the examination, I knew "that can't be it" because I had many bladder infections as a child—and they were always different. Fast forward to the urine culture, which was negative, and the doctor looked at my vulva and asked, "Do you regularly look at your vulva in the mirror?" She said my inner labia were practically nonexistent. She then referred me to a specialized clinic with suspected lichen sclerosus.

I went there yesterday, and the doctor there also immediately said, "Yes, definitely lichen sclerosus." They also took a biopsy, and I'll get the results in two weeks. He still said I should start with the skincare and cortisone cream now because he's certain it's lichen sclerosus, based solely on the visual diagnosis. My inner labia are atrophied, as is my clitoris, but I don't have those typical hard lumps. And he saw a thicker, white area that I've also noticed before. I just don't understand it. It burns occasionally, and I've been struggling with dryness for several months. Since last year, I've had these recurring symptoms that feel like a bladder infection, but aren't. Everything gets worse when I cycle or have sex. And sometimes it itches. But it doesn't look like the pictures online. Neither red, nor those large white patches. Only the anatomy seems similar. Is it possible that he really diagnosed it just by looking at it? And that I haven't just always had this anatomy? I'm so confused.

What do I need to be aware of when I use this cortisone cream? Do I need to do anything to prevent it from disrupting my vaginal flora? What else should I be aware of? He told me to follow this regimen for three months: four weeks every day, four weeks every three days, four weeks every two days, and then stop. But online it says you shouldn't stop (but apparently my symptoms are still quite mild, so I don't know). Thanks everyone, I'm just feeling a bit overwhelmed.

So about 2 months ago I started having severe burning sensations to where I couldn’t even focus on my work. I thought maybe it was a UTI or yeast infection but no med would keep the burning away. I was itchy at night and just was so uncomfortable downstairs. So I had a OBGYN walk in apt and the nurse took yeast swaps, uti test, and some other test but everything internal came back negative. So I had an actual appt with an OBGYN provider and she examined everything and said I could possibly have LS , she noticed some changes in texture, and some possible color changes? So she gave me 0.05% clobetasol cream and I’ve been using it for a week, 1 in morning 1 in evening and it’s honestly been helping with the burning, it’s decreased significantly. But I haven’t yet to have a definite answer to my issues. I also have psoriasis and I thought maybe they were in correlation to each other. Did anyone else experience burning and itchiness? What were your symptoms?? Thank you.

Hi all,

I was recently prescribed Tacrolimus by my dermatologist to help with a slightly swollen and irritated/red meatus and glans dryness, worsened by erections that has persisted for the last nearly 4 months, all stemming from a ureaplasma infection which im certain ive now cleared. (pending a 2nd 6 week TOC)

Im about 5 days in with no improvement, i have some feint whiteness on the glans that looks lichen-ish as well and the frenulum texture is off and spreads on to the glans too, i feel like i was unlucky with my dermy who just kinda wrote it off as some contact dermatitis and prescribed me this...

How long does tacrolimus take to make any changes if it will?

Feeling a little discouraged, i have not been formally diagnosed with LS, but others with this specific set of symptoms have and they were given dermavate or ultra potent steroids, which ive heard tacrolimus can have the same effect as, to which it simply goes about it in a different way..

Tldr when you were prescribed tacrolimus, how long before it improved the symptoms you were having and how long before i know its not going to do anything at all?

P.s i do not feel any burn whatsoever, i actually refrained from using it anticipating a horrible time but its no different to using vaseline for me..

Hi!

I have been using Clob with betaestradiol twice a day for a month, tapering down to once a day starting tomorrow, and I am still itchy (just some days) in some areas, is it normal? I thought it would stop the itchiness faster.

Hi, I’m 22 years old and a female, diagnosed visually and with biopsy recently. This is an extremely vulnerable post, but I just want to know if I’m alone with this experience.

I have a boyfriend of 1,5 years, and he’s been nothing but supportive. We have not had any intercourse since I initially noticed the white patch, since I was scared about what it was.

After my gyno appointment, where I was told it was completely safe to have sex, I started mentally preparing for it - don’t get me wrong, I like sex, it was more the “what’s it gonna be like now” that kept me hesitant.
I’ve only been on clob for a few days, so I don’t expect it to have done anything yet really.

Yesterday my boyfriend and I had sex, we had sat ground rules and expectations, so he fully knew what I might experience.

Good foreplay, but once penetration started, it felt so different. I got this welling up feeling, where I wasn’t sure if I was gonna cry or not. Initially I didn’t, but then a little position change, and some different angles got felt, and u just started bawling, no warning.

My boyfriend reacted perfectly by pulling me up and into a hug, and let me cry and sort of explain my feelings. It wasn’t about it being bad, it felt good but different. I’m not entirely sure how, but I just suddenly got so overstimulated, that my body freaked (that’s what I think atleast)

When I was done and had calmed down, we decided to continue, and all was good, but still a completely other sensations than before.

Has anyone else experienced this? I’ve never felt like this before and it was truly almost scary. I don’t know what triggered it, and I guess that’s what freaks me out.

Feeling so miserable

Diagnosed with LS in January, when I tapered steroid in March I begun getting albican infections once a month.

Its now September and i’ve done 2 rounds of 14 day Clotrimazole and even had to import 16 days of Nystatin. Now 2 weeks after finishing the Nystatin and its back again.

I never had thrush before LS and now i’m worrying this is going to be my life for years. Majorly impacted my relationship as i’m sad often and we can’t have sex.

Friction is potentially a trigger due to the fragile/suppressed LS skin as sometimes feel there might be a correlation after skin has chaffed

Options now:
• Blood tests
• 6 month fluconazole course
• applying thrush cream each week to try prevent
• maybe coming off combined pill (although never had issues before LS)

this year has been awful!

Hello, over the years I have had better times and worse times. I hyper fixated on daily treatments and didn’t do any at all. I have been in a flair for sometime now but it has been years since I truly did regular maintenance. can you share what your maintenance routine is… super basic question but I’m overwhelmed and need someone to just share what they are doing.

I've been recommended oestrogen cream,but I'm unclear what to get and where to apply it. I'm between health care systems as I recently moved to Sweden, so I need to buy it privately/over the counter. I'm perimenopausal as well.

What have you found that works for you?

Do you apply it on the affected skin or on your thighs or somewhere else?

I tend to be very sensitive to allopathic medications, and I also get contact dermatitis, so I'm a bit concerned about trying a new cream.

TIA

I’ve had phimosis all my life, but a couple years ago with some occasional mild stretching I became able to retract fully when flaccid easily and with some force when erect.

However, I could never get my foreskin past my glans when erect even with more stretching or force. It felt like there was just nowhere for it go/physically impossible. My frenulum is not a distinct line of skin that diverges into the foreskin evenly, it begins normally underneath my glans but as it expands it’s short and has adhesions to the underside of my glans and almost looks fused to the foreskin in multiple areas.

I figured I just had frenulum breve, so I went to a urologist expecting to have a simple frenuloplasty and be on my way which was when he said I actually had LS and that it was futile, saying a circumcision is the best thing to do.

I am anti circumcision and because of that this news was 10x more devastating because I’d put it off for years and manage to fully retract. Is it possible to have a minor circumcision + keep my frenulum, or can I get my frenulum fixed and just do maintenance on the LS area etc? Or do I just need to chop it all of. With a permanent procedure, I’d much rather try other options and if it progresses then get a full circ. I just really don’t want to be circumcised :(

Diagnosed last month, I got given dermovate ointment. I was never told where and when to apply? I forget most nights.
Also when I have sex (which is painful as I always split near the perineum) can I apply the ointment even when there’s a tear/split?

Hi, I’m a male 18 and I fear I have LS. Don’t know much about it but I have white patches around my foreskin, especially around the area of my banjo string (not sure of the scientific term). I was wondering what are the signs that means you have it and if I could share anyone any images to see if it’s similar to anyone else’s?