r/lichensclerosus

 Hi everyone,

I’m Kathy, Executive Director at the Lichen Sclerosus Support Network (LSSN).

I spend a lot of time listening to what people in this community are actually struggling with, and a few things come up over and over:

• “Is this LS… or menopause?”
• “Why does sex still hurt even when I’m ‘treating correctly’?”
• “Why do I get different answers from every doctor?”
• “Am I doing this right… or making it worse?”

And honestly… most people are left trying to piece together answers from Reddit threads, Google, and short appointments that don’t go deep enough.

So we built something to fix that.

This May (May 11–15), we’re hosting the 6th Annual Wholistic Healing Summit.
Theme: The Year of You: Rewrite Your Story

What makes this different:

👉 You’re not just getting general info
We bring together 12+ specialists (GYNs, derms, pelvic PTs, sexual health experts) who actually treat LS

👉 We go into the questions people are usually too afraid to ask
Menopause vs LS
Hormones + tissue changes
Pain with intimacy
Bladder + pelvic symptoms
What’s “normal” vs not

👉 You can attend from home, privately
No referrals, no travel, no waiting months for answers

👉 The Live Pass is free
You can watch all general sessions during the summit week

There’s also an All-Access option with the small-group Q&As (where people ask very specific, real-life questions and get direct answers), but even just the free sessions will give you a much clearer starting point.

If you’ve been stuck in the “am I doing this right?” loop, this is probably the most structured, medically grounded place to start.

You can check it out here:
👉 lssupportnetwork.org/whs

I’m happy to answer questions about sessions, speakers, or whether this would actually be helpful for your situation.

Hi! I have had what i thought was a bad yeast infection and/or bv for around 6 months now. I have been going to the doctor and none of the treatment has worked. Yesterday the doctor said it could be lichen sclerosus because she could see some lighter areas. I have looked myself with a mirror but i honestly cant see any lighter areas at all.. the skin only looks irritated and red. I have tried googling but cant really find any pictures of what the light patches should look like. How obvious should they be and in what spots?

Im on a waiting list for a gynecologist but really nervous.

So my mum and sister both just got diagnosed with lichen sclerosis. My sister said I should probably get checked also as it is genetic? I have booked a check in with my gyno. I do not have the itching and dry patches, but do have pain with sex. I also pretty much have no labia minora. Does this sound like it could be lichen sclerosis or not?

Hello,

I am considering switching to triacimiclone and getting off clob because I have recurring issues with yeast and it seems like the clob is so strong.

If you are in maintance phase, how often do you use the triamcinoclone? I am hesitant to switch to it because I was previously on it and I ended up using way too much steroid and it really messed me up

If you have LS and have had changes to labia, clitoris then is it possible there is also low Estrogen at play as well.

Went to see the derm, she agreed I have the plaques and took a biopsy so I should know sometime next week if I confirmed have LS.

What shocked me was she informed me I already have some atrophy and I also have vitiligo in that region. For context, I'm 18 and not sexually active so I tend not to observe that area very frequently haha.

I have a few questions:

1. How soon after starting treatment did itching begin to improve?

2. Did the atrophy/lack of elasticity ever improve/go away after treatment?

3. Does anyone else have vitiligo there, and if so has it ever gone away?

Thanks y'all

Just looking for reassurance that this is not INCREDIBLY uncommon.

I’m generally fine now feeling around 85 - 100% normal again I am always aware of my vulva lol- I’ve lost hope on ever going back to full normalcy. But, I can have sex and live my daily life with minimal discomfort which is a huge win. The discomfort but it is not as intense and does not last as long as before.

But what worries me is I cannot get past every other day clobetascol for all this time. If I do try to taper more than this, I end up in a full flare. I’m concerned about steroid atrophy at this point but my Derm and gyn don’t seem to be.

My last taper (I started in November and applied daily right up until March when I finally felt about zero discomfort.) Moved to every other day since then and feeling ok. I just wish I could get to the 2-3x weekly maintenance like so many seem to. 😔

Sending love!

Hi all,

I wanted to share my journey in case it helps even one person keep pushing when something feels off.

About two years ago, I started seeing someone new. Almost immediately after our first time having sex, I developed intense itching unlike anything I’d ever experienced before (not like a yeast or bacterial infection). Around that time, I was also under a lot of stress: my father had just passed away, and I was dealing with pain from a benign tumor.

At first, I assumed it was a yeast infection. My GP prescribed creams, then later fluconazole (multiple times), but nothing worked. The itching kept coming back. What started as something I brushed off at first became frustrating after taking way too long to get better.

I was referred to a gynecologist. They examined me and told me it was probably dry skin and stress. Tests for infections, STDs, and even bloodwork all came back normal. I was given a fatty cream and told to see a pelvic floor therapist.

I did that, but deep down, I knew this wasn’t the issue. I had always been comfortable and relaxed with sex before. Something felt physically wrong.

Over time, I kept going back and forth between doctors. I was prescribed hydrocortisone with miconazole, which helped a bit with itching but didn’t solve the problem. I started noticing tearing as well. So they recommended me pelvic floor therapy (again).

So after I moved to my new place, I saw a new pelvic floor therapist. During the exam, she said: “This looks like lichen sclerosus.” I was shocked and didn’t believe it at first. She pointed out the pale skin changes, but I honestly didn’t know what “normal” looked like before.

I went back to my GP for another referral. I was like I need to know for sure whether this is lichen sclerosis. This led me to the worst gynecologist experience I’ve ever had. The gynaecologist dismissed my concerns, said it didn’t look like lichen, and told me she’d “seen worse” like I wasn’t deserving of pity of my conditions. She gave me mometasone just to treat it like lichen - although she was convinced it didn’t look like lichen - which helped temporarily, but I could never taper it down without symptoms returning.

At one point, she told me to just try sudocrem or else nestosyl (which made no sense to me), and even suggested I use my strong eczema cream I already had for another skin condition: something my dermatologist had warned me to use carefully. I didn’t feel safe following her advice as she just randomly suggested me different creams without any specific reason or plan and made me feel like I’m some imposter.

I asked her about seeing a dermatologist specializing in vulvar skin. She told me to figure it out through my GP.

Around the same time, I saw a sexologist who suggested antidepressants instead of addressing the physical issue. When I expressed discomfort with her approach, she became defensive and made it seem like I distrusted all medical professionals (which wasn’t true I’ve seen many good professionals). I just knew something wasn’t right.

At that point, I felt completely hopeless. Two years of being dismissed, passed around, and not taken seriously. I took a break of some months just pretending it’s not there and this avoidant behaviour made it even more difficult to go back to a doctor for this issue again.

But I didn’t stop. I knew I had to do it. Reading positive stories here gave me hope again as well.

I called the clinic myself and explained everything. Finally, someone listened. They were surprised about the gynaecologist telling me they didn’t have furthwr options as she told me there was a specialized location of their clinic in Amsterdam (I live in Netherlands) where gynecologists and dermatologists work together on vulvar conditions.

This week, I had my appointment there.

Within seconds of examining me, two doctors confirmed: lichen sclerosus. They pointed out areas of fusion and structural changes I hadn’t even notice myself.

After two years of uncertainty, I finally had a clear diagnosis.

I’ve now been prescribed clobetasol, which I’m starting today.

I feel a mix of emotions: relief, sadness, validation, and honestly some grief. This condition has affected my life more than I realized. I stopped dating, avoid intimacy, and even distance myself from friends because hearing about sex feels too confronting. People don’t understand how something like this can impact your sense of normalcy.

At the same time, I’m proud I didn’t give up. There were months where I did, but something in me kept pushing.

If you’re reading this and something feels off in your body: trust yourself. keep going. advocate for yourself.

You know when something isn’t right.

I’m hopeful now. There’s a treatment plan, and for the first time in a long time, I feel like I’m in good hands. I’m even starting to feel a bit excited about the possibility of getting my life back: including intimacy.

Just wanted to share this with someone who maybe can relate. Any future advice on the clob use is also welcome.

I had the holepunch biopsy last Thursday on the NHS in England. The Dr couldn't get the first biopsy out of the site and so had to take another one, totalling in four stitches.

I had been on clob for one month before this, and using an emollient. The Dr said not to use either until the sites heal but dear god, it is starting to get so itchy. The itch could be the healing, the possible LS or both.

I appreciate everyone's needs will be different etc but has anyone's sites healed well using an emollient?

NHS dr's are famously not super available for questions like this so would really appreciate anyone's personal experiences (the good, the bad and the neutral)

Edit: I've been emboldened to use the emollient and it's made a world of a difference to my comfort so thank you to everyone who shared their experiences

I am still in my initial treatment phase (clob 2X/day for 2 months so far) and overall I feel significantly better but keep having setbacks when I have a bowel movement. My main symptoms are burning/pain/feels like a million paper cuts. I can be having a great day with no symptoms but as soon as I poop, I get that pain and paper cuts feeling in my fourchette and perineum area. It’s so frustrating and hurts! It occurs no matter the consistency or time spent on toilet. I can have a very soft, easy to pass BM with less than a minute spent sitting down and this still occurs :( Does this happen to anyone else? Any tips?

Help with finding right products!! With lichen sclerosis, what do you use to safely wash your body with and what shampoo is safe for people with Ls. There are a lot of products out there but looking for some that are affordable and readily available with least risks of causing skin reactions. Thanks.

Hi,

I've got my lichen diagnosed about 4 years ago and got it under control using a cortisone creme. I got pregnant and had to stop and now I am nursing and have to use it only once a week. My baby is 13 months now but still very attached to nursing and I dont want to give it up but my gyn recommended it so we can do more aggressive treatment.

Due to the whole "having a baby and things" I did neglect the personal care a bit. Is there anything I can do that doesn't require medication and will help with a flair up?

Thanks in advance

I saw my pelvic floor therapist today for the first time since giving birth. She told me that my labia minora has totally fused into the labia majora. I asked to see what a healthy vagina looked like and it absolutely broke me. Has anyone ever been able to pause the fusing? I fucking hate this condition

Hi folks. So I suffered for 1.5yrs because I was too embarrassed to tell my doc. Finally I did and she gave me betamethasone. I felt it get better by that night. By the 4th day it was gone. I continued for two weeks still, then another 2 weeks every other day. Then I stopped altogether. It’s been around 3 months now, and nothing. Could that be it?

Hi everyone! I increased my clob to 2x per day since Friday after my GP agreed as at my 4 week appointment she noted new area on my labia that was stuck down. I actually think I’m seeing overall improvement in skin colour but definitely seeing that my skin is very crinkly and thinner and the overall appearance of my labia since the start of clob 5 weeks ago is much thinner/reduced inflammation. I have an appointment with a private specialist on Monday next week and wonder if I should keep going with the 2x daily or if I should go back to 1x per day? I have been experiencing a pulling type sensation where the last of the fusion was noted and occasional irritation but Iam also ovulating so more moisture in the area as well and with the possible links to my cycle could atrophy be something I need to consider. Just worried Iam doing more damage with the steroid now. Or is it still the LS. Confused and worried 😟

I’m wanting to get pregnant in the next 6 months or trying to! I can have PIV sex without pain because my LS doesn’t cause pain in that “specific” area. Is there anything I should know ?

I am so pleased to announce two new TREATMENT studies for lichen sclerosus. One is a topical silicone product for women on steroids but sho are still symptomatic and the other is a BRAND NEW topical JAK inhibitor study. go to Vulvodynia.com/research to read about them. If you want to participate email at research.CVVD@gmail.com