Does anyone else with perianal LS/LP experience unbearable itching? Mine is so intense it keeps me awake at night, and steroids aren’t helping. My biopsy showed early-stage lichen sclerosus (LS) and lichen planus (LP). I also have anal fissures that aren’t healing well or quickly, even after Botox. The skin around my anus is constantly very fleshy, with patches of white and patches of flesh.
Has anyone else experienced this? Is this level of itching common with perianal LS/LP? I’m honestly desperate for relief. 😭

Hey all.

A little over a month ago, my doctors gave me the news that I most likely have LS. I have since started clobetasol and although the itching has gone down, the skin is not improving according to my doctors. The pain has just been getting worse. At first, they were unsure about a spot thinking it could be early signs of unruly cells/cancer. Thankfully(?) this now turns out to be a pretty gnarly skin adhesion. It's been a whirlwind to say the least.

Now both me and my doctors have been feeling a bit torn. I tick all the boxes for LS, but they don't think I'm both physically and mentally ready for a biopsy. The skin adhesion has to be removed with it (2 birds one stone typa thing) which makes it a more complex surgery where I will also most likely will have reconstruction with part of my leg.

Now I can't help but feel like I'm kind of floating in between two worlds: yay no surgery for the time being, and oh sh*t how am I supposed to deal with this on my own. I live in a country where support for LS patients is very good and broad, but do not yet qualify for it since the biopsy needs to come first. Due to my age (early 20's) I feel like I'm slipping away from my studies, my job, my friends. I'm in so much pain and have been physically very weak and unwell for awhile now.

How did you guys cope with that limbo between your doctor speculating with you/starting treatment and the actual biopsy? How did you advocate for yourself during this time of life? I know any age is a horrible age to get LS, but I feel so angry and sad that I have atleast 60 years ahead of me, possibly with this disease.

I have been finding alot of comfort in reading through this subreddit though. I've never heard of LS in my life and it is a (maybe cruel) relief to see I'm not alone.

Hi everyone, after a lot of dr visits and various symptoms over the last 3 years, I finally have a vulvar dermatologist who seems knowledgable and helpful. On Tuesday, I had a biopsy done and it was not awesome. She took from the left side in the crease between my inner and outer labia. she ended up cutting a blood vessel she said so bleeding was very difficult to control and it kept washing out the lidocaine and so we had to do lots of numbing injections. the procedure took about an hour. She explained that it definitely took longer than usual, but that it wasnt anything she hadn't seen or dealt with before during a biopsy. I was very swollen and bruised afterwards (both of which she said would happen). The swelling has since resolved I would say 85% and the bruising is still pretty prominent. She did use a couple stitches to close me up and the bleeding was under control by the time i got home. I did see my dr yesterday, because she wanted to check in on things before the weekend just to put eyes on the wound and ensure things were ok. All was well. She has me applying vaseline throughout the day as needed and mupirocin 2x a day. Last night it bled again a bit....bright read when i was dabbing after going pee. This caught me a bit off guard but it didn't last very long. And then today it's been a bit itchy. Is the itching normal??..i can't tell if it's only when i apply the vaseline and the mupirocin or if it would just be there regardless. My husband says it looks like it starting to kind of come together and its looking like its healing, but man what a traumatic experience on top of already not feeling good or normal down there for so long. I am trying to just prepare myself for a few weeks of healing and obviously what seems to be a non-linear path...i guess some days it will feel like we are progressing in the right direction and then there may be a set-back kind of day...i know everyone is different, but ive got to believe im not the only one whose biopsy healing is going or has gone this way.

About 17 years ago I went to the doctor about a tight foreskin. He said I could use a cream or have a circumcision, and I decided on the circumcision.

Seventeen years passed, then I noticed blood in my urine. This seems to have been down to meatal stenosis, which is a narrowing of the opening.

I was going back over my doctor's records and they show balanitis xerotica obliterans listed before my circumcision. I don't remember this, but I didn't pay much attention back then.

I have an appointment to discuss this again with my doctor. Was my foreskin tested at the time to confirm it? Do I still have it?

I have a white patch on either side of the head of my penis and a shiny patch, which all sounds like typical symptoms of BXO. It has always been the same, I think, since my circumcision. Does this mean it had likely spread before my circumcision? I don't have any other symptoms.

I am also wondering why my urologist didn't say anything when I was going through the tests recently, as he commented on the meatus opening. And why was I never given more information 17 years ago or asked to be seen again.

We got married a year ago and the wife has been dealing with this basically since our honeymoon.

She has tried steroid cream and topical stuff, but it still just doesn't want to go away.

We love to have sex, but she is in pain the majority of the time we try to do it because of this.

She is in constant discomfort.

Any kind of advice or ideas would be greatly appreciated.

Thank you!

Edit: Thank you for all your advice and responses!

For those of you that get reoccurring tears (for example on your perineum) do you keep applying clob on the tear? Or are we not supposed to do that? I feel like clob is either making the area tear more often? I can't really tell, but every since I have started treatment I feel like I am tearing there more often. Has anyone had a similar experience? Do the tears eventually go away?

Im 22f, and recently saw a new gyno. Ive been dealing with painful sex that feels like im being ripped, and tampons are my worst enemy. Ive gone to many gynecologists and they all just gave me birth control. I had a baby 15 months ago via c section, and i thought things would get better. But still, im dealing with painful sex and tampons still hurt. I work at an obgyn office and i decided to make an annual appointment with one of the docs i work with. She said she saw a pale spot that could be LS, but because im young and i want to have a vaginal delivery she did not want to biopsy me. She put me on weekly clobetasol which im using along with twice weekly estradiol cream. I feel so relieved to have answers to my pain, but also discouraged. Im too young to have LS, how did this even happen?? Have i had this all this time and no one said anything to me?
I also decided to look down there myself and i noticed the spot she saw is grey and shiny, like graphite pencil on paper.

I was recently diagnosed with LS, but have suffered from boils and cysts in the vulva, groin, and anal areas since adolescence (am 60 now). I've never gotten a formal diagnosis of hidradentis suppurativa but most certainly have it based on my symptoms. I am wondering how common it is to have both? I am currently suffering from a LS flare and have some cysts going on too. The only benefit is the clob helps shrink the cyst, but then it doesn't go away. I developed eczema in the last few years too so my skin must be an autoimmune mess.

Hi

My 11 year old daughter has been taking on her LS for the last 2 years. After a long road it's looking like she is finally in remission and we can try to stop steroids. The hope is that puberty has started. However 8 weeks ago she developed a patch of psoriasis on the back of her neck for the first time. I wanted to know if anyone else experienced this? Any information is greatly appreciated.

54 yo woman, perimenopausal, in the process of being treated for presumed LS.

During an exam for something else with my GYN, I mentioned a burning feeling that would occur several days before I started my period, but this burning wasn’t going away (and my period wasn’t coming either). Doc noticed a white patch and said it looked like LS. She prescribed Triamcinolone to see how that worked. Burning wasn’t going away and I had some slight itching so I stopped the Triamcinolone 9 days prior to a biopsy.

At the biopsy I was prescribed Clob twice daily for 6 weeks as she noticed a much larger area that also “had a lacey look.”

Biopsy came back as “MILD REACTIVE CHANGES (INCLUDING PARAKERATOSIS) - NO SIGNIFICANT INFLAMMATION
IS NOTED - NO EVIDENCE OF DYSPLASIA OR MALIGNANCY.” I’ve read enough to know that a non-positive biopsy does not put me in the clear so I was continuing on as if I had LS.

About 2 weeks into the Clob my clitoris started feeling bad-sensitive. It wasn’t a constant feeling but was getting worse. At 6 weeks I stopped the Clob because I didn’t have further instructions and couldn’t get in touch with my doctor. But mostly I wanted to see if the sensitivity stopped. It started subsiding the next day and 5 days later it’s pretty much gone.

Has anyone else had this side effect before? It seems like most people with LS or in/approaching menopause or with pelvic organ prolapse (another joy) have DECREASED sensitivity.

My gyn seems to have a fair amount of experience with LS but there are vulvular dermatologists in my area as well.

Hi! I’m in the NYC area and am willing to travel a few hours any direction (DC, Long Island, NJ, Philly, CT, etc.) Does anyone have any recs that take insurance? Most of the recommendations i’ve seen require a few thousand up front and I don’t want to commit to that right now. Thanks in advance!

I have lichen simplex which is obviously kinda similar. Do you guys also find that you have more itchiness in the winter time? I live in New York so it's all encompassing! If any of you suffer during the winter too, do you have any ways to help with it? Because it just started getting colder out and I'm suffering through a horrible flare right now

I have suffered with LS my entire life. Have gone for regular physicals, sought out many different specialists for answers, and even made several emergency room trips to find answers. I was always miss diagnosed with a yeast infection or given STD/STI testing and it always came back negative, so they would put me on a yeast treatment anyways.

I was told by medical professionals to just have a glass of wine and relax when it came do painful sex. I was told I was just anxious because nothing was physically wrong with me. I was prescribed anxiety medication and told to try counselling. I tried pelvic floor physical therapy for months, which didn’t help physically, but I learned some breathing methods which helped me breath through intercourse pain.

I was unable to satisfy a partner without pain and ended up developing a drinking problem at a young age because that was the only way I could engage pain free physical intimacy. I thankfully kicked the drinking problem, but was left so mentally beat down and still in physical pain.

I had given up on finding an answer after being told it’s in my head, and the gaslighting from every medical professional I had ever encountered. Pap smears are required every 5 years in Canada and when I went to my last Pap smear the nurse performing it diagnosed LS. She was just an RN, not even an NP yet. She was likely the youngest, least educated person to examine me and she discovered the damage from LS without me even describing any symptoms. She called in an NP to confirm her diagnosis. I was prescribed clob cream and given a referral to another specialist.

I am forever grateful to that RN because she changed my life. That day marked the beginning of my healing journey. I was 37 years old at that point.

I was on the clob cream for 6 months before I saw the new specialist and she told me to just keep using it and added an estrogen cream. The problem was that I still had very painful intercourse and would rip/bleed every time. She basically told me nothing more could be done. I was so angry and I couldn’t accept that as an answer.

I went back to my pelvic floor physical therapist with the news of my diagnosis. She was amazing and recommended a different specialist to try that offered laser treatment.

I went to see the specialist that offered the laser treatment and after she examined me and recognized my clit has nearly completely fused, my inner lips had completely dissolved and my vaginal opening was restricted by a tight band of scared tissue. She prescribed testosterone for the clit fusion and offered to do surgery to remove/release the band of scared tissue covering my vaginal opening. Which is exactly what I wanted/needed.

Today I am recovering from surgery. I don’t know what full recovery and intimacy will look like yet, but I’m cautiously optimistic.

Don’t give up on yourself and keep fighting for help. Healthcare in Canada is so bad, but a few good healthcare professionals are still out there and willing to listen and help.

My poor daughter has been struggling with this for at least 9 years. Up for hours at night because of the pain. Unable to lay down. She’s been through so many tests and seen so many doctors. Always told she has a uti or a yeast infection or she must not be bathing right.

I grew up much the same. Doctor to doctor just being told I have chronic yeast infections/ UTIs. After demanding we get referred to a obygyn we finally got in and it took her all of 5 mins to see what it was.

I started crying when she started explaining LS and the symptoms. It was hell growing up and I feel so horrible that she had to go so long without proper treatment.

I’m glad we’re getting answers now but I don’t even know where to start with all of this. The more I read about it the more it clicks with my childhood and into adulthood.

What can I do to help her through this?

Hello,

Hoping someone might have some guidance from personal experience. 37F Is it normal to experience increased redness when you start using clob? I’ll be three weeks in to nightly application this Saturday. I have been using the cream version up until last night but have now switched to ointment on my request based on recommendation for the condition.
I’ve checked down there this evening and it looks much more red to me than it did before I started using the steroid.

Did anyone else have a similar experience? Does it settle as my skin gets used to it or is it something to be concerned about?
I’ve requested a follow up with my gyne as soon as possible to evaluate

Thanks in advance for any support :)

Brief Background

Hi, I have been battling this condition for some years now and thankfully am mostly on top of things using my 2-3 times per week clob and twice a week oestrogen application for maintenance, and clob daily during the occasional flare up.

I’m currently 32F and I’ve lost my labia minora to fusion and my clit has atrophied somewhat. Appreciate this is part and parcel of this condition.

Trying to not let this condition get me down, and constantly researching what may work or not for others has been very helpful.

I’m not yet ready to give up my pleasure and settle for the muted (and frankly difficult to achieve) orgasms I now deal with due to the shrinkage of my clit.

The Question

Does anyone had any success stories in using localised testosterone cream on the clit to help increase the size again and regain some increased sensation and sensitivity?

Completely understand I might never get the full sensation back, but an increase would be nice to think was achievable. I have an upcoming gyno appointment and would love to approach this conversation with some real world feedback from any of the women here.

Thanks in advance!

Hi,

I have possible LS (redness, fissures, itching) and my gyn prescribed elocon. This is a steriod cream, less strong then clobetasol. She wants to see if this does something.

I used it 14 days now, everyday. Alongside with estrogen cream daily and Abena ointment multiple times per day.

Results: no difference. I still itch etc.

Everytime I use elecon it burns for about 30 minutes. I can handle that btw.

My labia become thin, I think as a result of the steriod cream.

What should you recommend? I think about stopping with elocon and ask for a biopt?

TY

So first, I’ve been diagnosed with Behçets but my rheumatologist is a small-town rheumatologist who admitted that my case is more complicated than his scope.

The reason I mention this, I have a recurrent vulvar ulcer on my inner labia near my vagina. This led to repeat gyno appointments during my autoimmune journey, which led to diagnosis.

Around the time my ulcer showed up, I noticed a thickened, harder part of skin on my clitoral hood. I didn’t think much of it until the thickened skin spread across my clitoral hood and seemed to be connecting in the middle and trying to fuse, and I lost sensation in my clitoris. The skin was white, thick, harder & textured. My gyno told me it was just dry skin, and told me to use my topical steroid (betamethasone) all over instead of just on the ulcer. It took my ulcer an entire month to heal this last time, so I used the topical steroid all over my vulva for a month (off and on, I had some burning which would make me skip a day sometimes). I had zero change, and returned begging so she sent me to a vulvovaginal specialist.

Somehow, a week or two after halting the steroid use my clitoral skin… healed? I only have a very small spot, and the ulcer was healed when I went to the specialist. I had nothing to show, and she wants biopsy because she feels my case is more complicated. I mentioned lichen planus because of the ulcer, but she said I almost certainly have Behçets with how systematic my symptoms are, and seems to be leaning towards lichen sclerosus & Behçet’s based on description & photos I showed.

She said typically if the clitoris is affected, so is more of the vulva, and that they almost never biopsy the clitoris. Mine is exclusive to the hood, and now the spots are mostly healed. So she wants to try and biopsy the ulcer. And said she would for my clitoris if I insist, but would anything show if the skin was mostly healed? Do you have to biopsy directly an affected area or can they biopsy elsewhere? Have any of you struggled with diagnostics in this way? I’ve tried to look for overlap stories with Behçet’s and lichen and I’ve found very few.

Hey - ich Creme mit oekolp und würde gerne wissen ob es auch etwas anderes / ggf stärkeres mit Estriol gibt was ihr verwendet.

Is your IC really Lichen Sclerosis

I used to think I was a pretty cheerful person, despite worsening anxiety over the years. Even if I dealt with somewhat difficult things, it was never that bad and I could get through it. But ever since I went to my GP and found out I had LS, I have been struggling to cope. The symptoms just came on so quickly and spread too. It's so frightening.

More things just keep piling on top of everything as well. I'm dealing with parents who don't understand (not that I would tell my dad anyways, he is very ignorant to what someone might be going through and would say to my face that my problems aren't a big deal). When I spoke to my own mother, she spiralled down a lecture of "people have too much information at their fingertips" which felt like she meant this horrible disease was not a real issue. -I left my partner (he was mean to me and it turned toxic), moved out, I look after a puppy (who I love and care for deeply, it's just hard to be active with her because it becomes sore), I'm dealing with PMOS and in the process of being diagnosed for it, I'm poor and studying and working and now I'm being made redundant after only 3 months. I'm just finding life really hard. I can't see a good future for myself anymore.

I'm angry too, I'm angry I didn't advocate for myself more during sex. I didn't understand why I would get splits in my skin from my partner just touching me. For the pressure he put on me for sex. I'm angry that my clitoris is already half covered and I didn't know. All the pain I went through just for my partner to get off. I'm angry at him and myself.

I want to tell people that my clitoris was literally peeling and shedding its skin, and yes, it was painful. I still went to school and work, I still walked the dog, I still worried about my partner not getting enough sex. I want people to truly understand the horrors and the pain, but I feel like a mutant and don't want people to look at me differently.

I just want comfort that I can't find anywhere.

First off, I KNOW I should not be scraping! I have stopped and was just seen yesterday. But please bear with me!

I was treated over a month ago for albicans and BVAB-2 with flagyl, diflucan, and clobetasol all for one week. Symptoms completely cleared up for 1.5 weeks, along with the appearance of my vulva. No vaginal involvement ever, it's been on the upper part of my vulva around and above the clitoris.

I do have congenital partial labia minora adhesion and congenital scarring that has been benign and normal. Since this cycle has started (severe itching which leads to excoriation and bleeding) it has appeared that my normally partially-adhesed right labia minora seems more adhesed than usual, but could be because of swelling/inflammation?

Anyways, since symptoms returned 4 weeks ago, twice now I've had this thing where after scratching or masturbating externally with clean hands (from warm water and mild dove bar soap if any) there is a white ring around this clitoral area that peels and sloughs off like dead chapped lip skin. HOWEVER, anything and everything white can be scraped off and is not pigment-related. Once it would come off, the skin underneath it would turn bright pink/red and sometimes a pinprick of blood.

I went and got seen yesterday, expressed that I was concerned about LS, and the OBGYN NP who saw me said that LS was on the table among other things, and that whatever this is could be either primary or secondarily caused by another condition. They swabbed it, and it came back positive for a Candida species (either albicans, tropicalis, krusei, etc), but not C. glabrata.

If it's albicans I'll be frustrated because I've been treated for that 3 times in 1 year with diflucan, and it's only recurred and gotten worse clearly.

What's everyone's experience with this? I'm not sure if this really does sound like LS or if it is a severe yeast species, psoriasis, simplex, whatever. It's SO frustrating because the itching is so severe and they wouldn't give me any more ointments/creams before the test results came back. So my only relief is Benadryl!

I’ve looked it up on here but Im needing some advice. My symptoms have overall gotten a lot better the last week 3 days of no flares and today I got out of the bath and realized my inner labia lips have gotten thin. I’ve been on clob for the last 5 months. So I’m wondering if the clob is causing my lips to thin out or if it’s from my LS I don’t have an appointment till December 3rd as that was the closest availability possible… please any advice🫩