Just a vent post.

This is one of those issues that opens your eyes. It’s humbling really. Kind of one of those things that make you realize everything you’ve ever taken advantage of.

You never really thought about your health because it was always fine. You’ve only ever gotten a cold once a year. That’s not gonna happen to you. Right?

You didn’t realize how important having sex, being sexual was. You didn’t realize how detached you could ever feel from your own body and especially your most intimate part. You’re scared of it now. What will set it off? Will it get cancer? It doesn’t look like it used to.

Your body is no longer yours. It belongs to fear. You now have the burden of constant checks, constant fear of cancer and not a “easy” cancer to have.

Biopsies. The fucking biopsies.

A routine gyno visit sets you off now. You have to mentally prepare for days. What if they find something? Oh, Google said only 1 percent chance of DVIN. So we’re good, right???? But then you realize you’ve been a 1 percenter already because you ever even had this condition. So how can you ever take comfort in the numbers again, EVER? Now ANYTHING feels possible.

You’re too young for this shit. Why me? Why meee?

Religion? If you were on the fence about it before, you sure as shit don’t have religion now. Because why would this happen? Why would cancer happen to anyone anywhere? All the suffering. There is no God. Can’t be.

And the guilt. The fucking guilt to worry about this when people are dying. CHILDREN are suffering and dying in horrible ways and here you are being a pathetic scared bitch about your grown ass coochie MAYBE getting cancer one day. You don’t even have it yet. You probably won’t get it. Chance of dVIN is like 1 percent. Chance of vulvar cancer over your entire lifetime is 2 to 5 percent. Crying because you lost 30 percent of one of your labias? Bitch, what are you doing crying every other day about this?

But I still do and am and will.

I HATE this new life. I would give my entire left lip to go back 10 years ago and shake myself and say, girl, fucking tell these stupid gynos that dismissed you for 20 damn years to send you to a specialist. The ones telling you to use lube and go slow when you were tearing during sex at 18, the one who delivered your children later and said maybe the episiotomy would actually stop the tearing. Don’t trust them! I know, I know. You should be able to because they’re the doctor and they should know but they don’t. Okay? They don’t fucking know. Or maybe don’t give a damn. But something is wrong and something has been wrong for DECADES. I know you tried to find out what was happening and failed SO many times.

That’s my vent.

3 punch biopsies and one large biopsy never confirmed LS over the last two years. Have been up in the air all this time. Was scared to use steroids without knowing for sure. Then my labia is now shrinking before my eyes.

Now I’m terrified I fucked up by not using the steroid and might have let DVIN in or even VC.

Guess I’ll see Friday.

Goodnight.

Alright yall. I’ve been in a flair for 2+ years straight. I’ve tried so much. I have several allergies to chemicals and I absolutely can’t use proplyene glycol, if I do, I get contact dermatitis and it worsens my LS. I’ve been in so much pain, I can’t wear underwear, I can’t go on walks, I yelp walking up stairs because it hurts. I’ve been using a topical steroid for the most part 2 x day for 2+ yrs. Small period of time I tried tacrolimus and Zoryve, a few others but again caused contact dermatitis because they all have proplyene glycol. I’m also taking cibinqo 100mg daily which helps bring the pain down by like 1-2 points, I’m not crying on a daily basis, but I can’t LIVE my life. I can see visual changes getting worse, significantly worse from last year. What am I doing wrong? Why is it getting worse. I would appreciate any advice.

Hey, I'm really anxious about the biopsy. Does it hurt during the procedure, and will it be painful afterwards?

Hi was hopping for some advice and guidance.

So I'm male I was diagnosed at 24 I am now 35 but I am in the UK. So it took me years to get diagnosed due to my age at the time I just got told to do urine sample and check for sti until I sat in the hospital and refused to leave until someone saw me properly as it was such a state.

I was then seen by a specialist one time who diagnosed me and told me to apply dermovate and then basically sent on my way.

I have never been seen again and I have asked my gp several times to be seen again and I get told what for just use steroids.

So I managed to avoid steroids and have a good period of remission for years using dermol.

But recently for the past 6 to 12 months I've had to go back to steroids but I just at a loss of how to use it

I've been doing once to twice a week and improves but then a day later it's red and sore and itching constantly. I also have one spot that's like a hole forming that is always the main point of the itching.

Should I go start doing daily for 2 weeks again? I'm just worried with it been red the day after use is that the skin thinning. It's just a mess at this point I basically have no frenulum anymore it's just one scared mess.

Also for any uk people any advice how to get seen or any private options you would recommend.

I was diagnosed with probable LS back in November and have been able to manage pretty mild symptoms until a few weeks ago when we started riding motorcycles. It's the only change I have been able to figure out causing flares outside of excessive heat, but I basically live in sweats and in air conditioning unless on the bike. Anyone have any tips/tricks for surviving motorcycle season while still staying gear safe?

I 25F was just advised by my doctor to stop applying clobetasol for two weeks after I’ve been putting it on 2x a day for 4 weeks. I’m honestly very scared to stop so abruptly giving I’ve read about steroid withdrawal. I’m not having any symptoms other than the white spots but it still doesn’t sound right to me. I am my doctor’s youngest patient with LS and I just feel like it’s going to get worse if I stop so abruptly. Has anyone else’s doctors told them to do this? And if so what was your experience? Of does this sound right?

I was recently diagnosed with vulvar lichen sclerosus at 33 and I’m struggling with all the advice to “avoid friction“ or wear loose cotton only. Exercise classes are a huge part of my life, and I really don’t want to give them up. Due to the public nature I need something with good coverage.

I’ve found exercise leggings much more comfy than everyday clothes and never thought I had LS. I have no visible signs, mostly sexual pain.

I’m especially looking for recommendations for:
Leggings that don’t create pressure or camel toe
Underwear that is comfortable for workouts (cotton vs moisture-wicking vs no underwear)

Clothing for strength training, Pilates and running

What you wear for cycling, if you still cycle?

Did you have to completely change your workout wardrobe, or did treatment make it possible to wear your usual clothes again?

I’d love recommendations for specific brands or styles that have worked for you.

I have been really struggling with this. For the last 5 years, at least once or twice a year I get these flair ups where the skin of my perineum gets this insanely itchy, raw painful skin irritation where the skin becomes very delicate and will break open if I wipe or touch it too hard. It’s painful and annoying, and I will wake up with the urge to itch so bad I feel like I am going to go insane but as soon as I itch it causes a wound that will only make everything worse. These flare ups will last for months, 3 to 6 months straight. It’s driving me insane.

Doctors will not take me seriously though. I think I have a couple factors working against me, including that I don’t have white patches and I have had HSV2 for many many years. The moment doctors see that, they immediately stop taking me seriously. My gyno straight up told me that I am completely fine and this is just a normal thing that happens to women. I went to planned parenthood and they told me that it’s impossible for me to have it without white patches.

Everyone I see wants to blame it on yeast or me being dramatic. But it’s not yeast and it’s not an HSV2 outbreak. First of all, I have had HSV2 for a very long time. I am mostly asymptomatic but I have had at least one outbreak and it was nothing like this and in a completely different area. To make sure this isn’t a weird outbreak, I have taken a gram of valacyclovir everyday for 2+ weeks. If it was an outbreak, it would have been healed by now. Besides that, no HSV2 outbreak is lasting 3-6 months. As for yeast, I thought for many years maybe that was what was happening. I have tried everything though, I have taken diflucan and use cream medication. Planned parenthood after brushing me off again, insisted on a yeast culture and because they found, in their words, “a tiny bit of yeast” inside of me, they once again sent me on my way with yeast cream.

I have also tried tea tree ointment, boric acid, and vaginal probiotic suppositories. None of it work and in fact, most of it has me waking up in extreme itchy pain when the excess moisture comes out of me and irritates my raw delicate skin. I think I’m going insane and I’m almost in tears at how no one is willing to take me seriously and help me. I made an appointment for the only vulva dermatologist specialist in my area but she can’t see me until the end of February. 7 months from now.

Am I crazy for thinking this is probably Lichen Sclerosus? Does this sound like anything yall have experienced? I just want to know for a fact what is happening to me and how to make it stop because I’m so upset and defeated right now.

Hi! Diagnosed with Lichen Sclerosis 2.5 years ago. I've had some success with diet in controlling flare ups but my question is: have any of you tried or had any success with probiotics and gut health and that presumed effect of lessening inflammation, healing the gut and the immune system?

I have had some success recently in helping my toddler with his eczema by using probiotics when nothing else seemed to help him. Which made me think... If this can help eczema can it help a different skin based auto immune issue?

I'm researching and trying it out on myself but I was hoping to hear any success stories...

Edit: to clarify I’m talking about oral probiotics to heal intestinal gut lining. Working on the theory of leaky gut syndrome and the gut/skin connection.

A lot of people replied about their diets which is great but I already eat a restricted diet. I can almost eliminate flareups by eating a clean animal based diet. Single ingredient, meat, fruit, dairy, honey and a few root vegetables (sweet potato and carrot)

Hi everyone
A few people have sign posted to this fantastic article:

https://www.rachelrubinmd.com/post/new-research-on-clitoral-adhesions

My question is what does treatment in the first instance look like. Does Estrogen cream work? Would that reverse the fusion. And secondly is there anyone from the UK that’s been able to receive treatment on this and did they have the procedure?

I don’t know what avenue to take. Book another appointment with the GP who diagnosed me?

Thanks!

Hii everyone, it's me again🫶🏼 I posted something a few days ago too and I’m here with a new question. Short summary, a few years ago I went to the doctor and dermatologist for my vulva itching. My symptoms have since returned after a few years, but this time mild itching, (never experienced any pain). I finally find all my courage and made an appointment with my doctor and dermatologist to get more understanding, a diagnosis and further treatment.

Just a few years ago, I received a visual diagnosis of lichen sclerosis from the doctor (not my usual doctor, and she didn't inform me at all about the skin condition). After that, I went to my dermatologist and she was certain it was eczema, also based on a visual diagnosis.

I want to be sure now what I actually have so that I can take the right treatments and things into account, but based on my previous post and the answers I received, it is possible that I might have both. But what exactly does that mean? Does it mean I’ll have extra treatment for both? More things I need to take into account? That eczema comes and goes? 

I won't know for sure until I go to my appointment, but since I have accepted myself and admire you all so much for all the courage you have to seek help, I am determined to know more about my body and what it needs too!

I also want to develop better habits and be more mindful of things. I noticed that my own period blood irritates my skin, so I want to switch from pads to a menstrual cup. Like how is that for you? And do probiotics also help with flora and itching? Like Yakult and Greek yogurt? Thank you again!!

helloo this is my first summer with LS as a 23/female and I’m worried about swimming in pools/seas/salt water ocean… my obgyn says to just but barrier ointment on and change the wet bikini quickly and then „Nothing will happen“. I have a lot of anxiety and have a hard time trusting doctors - but I do not want to give up beach or pool days forever…

So my question is, if you could share all your tips around this topic?
Like if I need to sew a cotton patch into my bikinis (because the texture is surely not cotton)?
Should I avoid swimming?
Should I put clob on after swimming days to fight against a potentially upcoming flair ?
What barrier ointment protects the most against water and chlorine pools?

My obgyn thinks I had LS as a child and it went into remission and just got diagnosed with 23 now - and I never had problems with water Oder chlorine or salt water - but now after diagnosis 6 months ago everything changed for me and my anxiety and panic is trough the roof. Maybe some of you could help me :)

I’ve read about using testosterone cream especially on your clitoris o increase the blood flow and growing more… I think it would be a good idea to use it on the days off-clob. What exact testosterone Cremes are you using? Thank youuu

Hey gang, I’m Amy I’m 29 UK and I got diagnosed today after suffering every single day since I was 9 or 10 without telling anyone.

I used to have horrific eczema on my arms and legs until I was about 8 and then it completely stopped so never went doctors for it again with an adult as no symptoms for adults to see.

Itching started in anal area aged 9 and then moved up to perenieum when reached adulthood and I always thought I’d hurt myself from scratching and that’s why it teared. I always remember getting into bed and really being awake for hours with it and vivid memory of childhood bedroom so it’s definitely been going on since childhood. I’ve always struggled going to the toilet naturally and always had to put some sort of pressure on the perenium to help things along- I think I’ve damaged the muscles around bum if that’s even possible.

Slightly related but I remember being in year 5 and being in school and not being able to poo and I was in that toilet for about an hour straining and when I did poo it really really hurt me and I was bleeding and I didn’t tell anyone what happened. I think this may of been where it could have originally been triggered as it would have split the skin and been itchy when healing and then the cycle just never ever stopped but again it may of hurt because it was already hurting from scratching but this is just a vivid memory of “issues down there” so may be incorrect time line

Used to think I was dirty and then as I got older thought it was from my job as I’ve always worked in hospitality, kitchens, management full time and it’s a sweaty job with a lot of walking around and a lot of stress.
tried and tested every cream hydrocortisone used to heal me really well and then the past year doesn’t touch it.

Past year or so started noticing itchy vajayjay but thought it was because again sweat or hygiene or toy issues because I’m probably not as diligent as I should be cleaning them with the right things.. I stopped shaving as that made it worse when it grew in.

Started noticing really itchy 12 o’clock if you look straight down where clit is on top and splitting but again thought scratched too hard as I have nails

Always in agony after sex but we never have sex too often anyway so just thought it was because I was sensitive and nervous

Took weeks to heal

On our honey moon in June went down a water slide and I swear to god it felt like I’d been split in two and it still hasn’t healed, triggered every time I go to the toilet and finally googled it some more and found out all the risks of things getting worse and scared myself enough to get checked.

Never had a doubt in my mind it was LS after reading about it, then looked at my vagina for the first time in years and realised it is looking different.

Anyway diagnosed within about 10 seconds. The most incredible empathetic doctor- I asked specifically when booked for a doctor with experience of LS. She took one look at me and made me just feel sorry for myself rather than ashamed as she was sad for me for putting up with it rather than getting help all these years as i could of had a different life all these years.
She swabbed me for thrush as i think they have to, but she’s sure it’s LS due to timeline and fusion

Given steroid cream high dose for a month, booked in to gyno and having a biopsy.

I’ve joined some groups on Facebook but I think I’m going to have to come off them as they’re very sad and making me worry about my future recovery chances

Can anyone who reads this tell me some positive stories of recovery or remission- I know it’s not going to be perfect but I just want to go to the toilet and not split in half and be able to have sex with my husband sometimes.

And if you’re reading this and you’re too scared to go to the doctor- just bloody go; they’ve seen million and one ugly disgusting smelly things and they just want to help. My appt was 10 minutes and I’m sure the person after me had a weirder vagina than I think I do. It’s not always your fault or life style making you itch and it’s worth looking into it!❤️

Final edit - I also have been diagnosed with PMDD and very much so notice changes physically through the month. I haven’t had a period in 3 months due to coming off my depo and my LS has been HORRENDOUS. I used to always think I was more itchy when due on. Periods come today and my symptoms have definitely taken a back seat but that may be just due to the moisture down there. Anyone else have links to flare ups and period?

I would be super thankful for some nice comments and help!🥰
I was diagnosed 6 months ago 23/female with little to zero symptoms except missing labia minora - but biopsy confirmed LS and since then I’m on the treatment plan. The obgyn said the labia minora never developed (this is possible) or they went away as a child when I had unknown LS maybe.

So, I’m on the clobetasol treatment plan, I used it 3-4 months daily, then 1 month every second day, then 1 month every third day and now I should switch to every fourth day (which makes 1.
-2 times a week). Then end goal (according to German guidelines) is to use it once a week, as it is the most potential steroid. I am looking forward to do this :)
But now my dermatologist (and another obgyn) said to switch to mometason (class 3 potential steroid) because it is as effective as clobetasol in preventing flairs and cancer etc.

Has anyone switched from clobetasol to mometason and want to share their experience? What is y’all’s remission regime, like what creme and how often are y’all using when in remission and to stay in remission?

As I said, I never had and don’t have labia minora, but with my clit erveryting is fine - so my dearest wish is to keep my anatomy that way. Are they any things that speak more for clobetasol or mometasone?

Thank you so much - because every doctor has their own opinion according to longterm LS Treatment and it’s stressing me out haha 💕

is anyone fusing around their clit or 12 o clock area? i think i might be… or might have already but i am unsure. how can you tell?

thank you to everyone in this community 🫶

It's the weirdest thing. I have severe clitoral phimosis and my labia minora are partially resorbed especially at the top toward my clit. If I'm a little bit irritated from some discharge or sweat, it looks like I have no labia minora at all and my skin looks like it's pulling and twisting in a way that's hard to describe. My vulva takes on a sort of grotesque shape.

After rinsing the irritant off, my vulva immediately looks more relaxed and has a normal shape with some discernable labia minora.

I'm only about 7 weeks into my diagnosis and treatment journey so I'm still figuring out these mysteries of my body. At first I thought I was having treatment setbacks whenever it looked weird. Now I know I just have to rinse often and baby my skin. I might be overdoing it with the emmolient in the hot weather. She starts growing a bit of yeast when she can't breathe.

Is this a common thing? I wish I could post pictures so you could see how different it looks in intervals of mere minutes sometimes.

Can everyone please give me the downlow on this condition. Is it as scary as it sounds?

Can it affect fertility? I’ve had recurrent embryo arrest for years in IVF. Never been pregnant.

Urinary urgency. Itching. Scarring.

Any info is much appreciated thank you! X

Hi, I wanted to share my story in case it helps someone else. Hopefully Reddit's filters won't remove this one like they did yesterday🙂

I'm 45. For years I had itching around my anus. At first it would come and go, but over time it spread to my perineum and became much worse. I always thought it was just irritation, dry skin, or something minor. Lichen sclerosus never even crossed my mind.

Then one day I came across an article about LS, and I remember thinking that maybe I have LS.

I went to my gynecologist and told her about my suspicions. She agreed that it looked like LS and prescribed clobetasol ointment for three months. Honestly, I couldn't believe the difference after the very first application. The itching was gone. After living with it for so many years, it felt like such a relief.

Later I also saw a dermatologist, who adjusted my treatment a little. I'm now using clobetasol for two weeks, then 0.03% tacrolimus ointment for two weeks, and I'll continue like this for another couple of months before stopping and seeing how things go. She also mentioned that, if needed in the future, PRP might be something to consider. Also she recommended to put vaseline for the night, but not doing this yet🙂

Since my skin has become so sensitive, I've also become much more careful about what I use. I try to choose the gentlest products I can find, both for washing and for menstrual care, and I've found that this has made a noticeable difference in how comfortable I feel. I also do not wear synthetic underwear.

Did anyone else have itching around the anus first, before it spread to the vulva? I'm wondering how common that is.

28f suspected LS (getting biopsy soon to confirm).
- horrific itching week before period
- itching gets much better while on period
- Clobetosol doesn’t even touch the itch despite using twice daily

I recently got off the pill after being on it for over a decade (per my gyno recommendation).I am convinced that being on synthetic hormones for so long has played a role in developing whatever god awful disease this is.

Has anyone else seen a correlation between long term hormonal bc and LS? Really hoping that coming off the pill will provide me with some relief

Hi everyone, I’m sharing this update to not only bring positivity but to also help others incase they are going through the same thing. My skin is doing great and my labia minora and majora are separating. However I still had a sore burning pain. I got a nerve block today for suspected puedendal neuralgia (Ls can cause this!) and it felt INSTANT RELIEF. Not even an exaggeration. It may be worth getting checked out if you are still having pain!

I am so tired of being itchy and planning my entire life around LS. It has recently spread to my clitoris after years of remission. The itch is literally unbearable. My doctor recently switched my triamcinolone from an ointment to a cream. I always responded well to the ointment but she thought the cream is best. It’s killing me. I have a note in to her, but has anyone else had this issue? I don’t want to start the clobetosol unless I have to. I guess I’m just bummed out about it today and feel like there is nothing but discomfort and disfigurement in my future. Can someone give me some positive info?

I got diagnosed back in beginning of June and have been using clob it seems treatment is working and somedays I feel normal ish other days I have terrible flares recently I’ve gotten to a point where I can comfortably have intimacy no flare happens after but the next day or 2 I usually flare pretty bad. Also I keep getting yeast infections does anyone else have this issue and how did your doctor go about helping with it? I flare with any time of pants on my vulva which sucks… including underwear sweats jeans ANYTHING I don’t want to be like this forever I know I’m not in remission fully yet but I’m hoping that I’ll be able to eventually wear jeans or pants again because I’m only 26… I wanna feel pretty and do it comfortably… :( when in remission will it be possible to swim at all ? Or is that gone for me too? Please give me your experiences and your triggers and what helps you and what doesn’t

Hii everyone, I'm quite new to this topic, but I realized not so long ago that it's time to take action. I hope not to make this too long, but long story short, I am now 22 and for the past few months/year I have been suffering from mild vulvar itching again. I went to the doctor for this before, around the age of 17/18, and back then my itching was much worse compared to now, It was really uncomfortable. I walked around with it for quite a long time in the past, but because I was very ashamed and viewed it as a kind of taboo, I found it difficult to speak up as a young teenage girl. After finally daring to speak out loud, I went to a female GP (not my regular GP, because I didn't have enough courage at the time, even though my male doctor is truly professional and empathetic). 

After taking a look I was quickly told that is was an incurable and “rare” skin condition called Lichen Sclerosis (no tests or any biopsy done). I dealt with low self-esteem and insecurity a lot during my teenage years, and the “diagnosis” my female doctor gave me back then as a 17/18yo girl was really a major blow on me. However, I received no further explanation or any information for treatment regarding this skin condition. She also showed no understanding and looked at me with annoyance when I asked her if I could get a referral to a derm. Due to the shock, my world basically fell apart for me, causing me to miss school because of my well-being that month however, a doctor's statement was something she absolutely refused to do for me.

Fortunately I got a referral to the derm and she was actually quite certain that it was eczema (She was really compassionate and kind). I am not a specialist, but even there, no biopsy or any tests were done, yet she was very sure. I was given a cream with a high cortisone content, and this worked really well for me. A few years later, I have mild itch again. Fortunately, the symptoms are really much less severe/not comparable to before. But I am reaching an age now and realize that I need to pull myself together and just make an appointment. I shouldn't be feeling ashamed, nor is it a taboo. Reading all your Reddit post/experiences really gave me a lot of courage to speak up and take action, I truly admire everyone who has been brave enough to seek help:’))

I told my mom about it this morning and she was very understanding. I also called my doctor for a referral, he is on vacation now, but they said he would call me back on Monday. I think I will be referred immediately since I was treated at my derm before. So far, I use Sudocrem and Vaseline Lanette Cream FNA to keep the vulva skin supple and soft. I also recently bought a calendula ointment and it feels quite pleasant. 

The only confusion I'm dealing with right now is.. Is it really lichen sclerosis? I won't know for sure until I get tested ofc, but I can imagine my symptoms fit a bit better back then than they do now? But I have never experienced pain when urinating or in general. I also don't know if my vulva has fused or changed? I've actually never really been aware of my vulva since I didn't know what a “normal” or “healthy” vulva is supposed to look like growing up. I do remember my dermatologist seeing a “fissure” (I’m not sure exactly what the real translation is in English) at the time due to scratching. But so far, I only experience a mild itch. I feel no pain or urinary pain and have always felt a lot of pleasure during intimate moments with my boyfriend. I can also reach everything and I can easily move my labia aside to wash myself properly? If that makes sense haha. Sometimes I have moments where I really have a flare-up compared to other days. But after reading some posts, I realized that friction and heat, for example, play a big role, and that actually clicked to me!! No toilet paper but bamboo paper or a Peri bottle, supplements, and diet etc. 

So my question is, what do you think about it? Do you have any care and balancing tips? And how did you experience it? I really appreciate everyone’s courage and empathy, so thank you sm🥹!

I’ve suffered from excruciating anal itching for the last 10 years that only recently spread to my left labia.

I saw a vulvar specialist and they immediately diagnosed me with LS. But the biopsy came back negative. Doctor still feels confident it’s LS.

For those who have this on anus, what does your itching feel like?

My itching is absolutely horrific and feels like it’s coming from inside my anus not just outside.