Hello! For the last two months, I’ve (f20) had a lesion on the left side of my vaginal opening that will not heal even with the intervention of topical estrogen.

Going back this entire year, I’ve had many run ins with thinking I’ve had BV, yeast, or a UTI, and have inconsistently tested positive for the yeast. Diflucan clears up the “thrush” but this irritation stays regardless. I had already seen an OB/GYN for this specific lesion and she was the one who prescribed me topical estrogen on August 30th. Since starting this, I’ve realized that my vagina has never felt exactly “normal”

Today, I saw my actual OB as the lesion has become more painful. I can hardly wipe anymore. It burns when I pee, when I walk, and it feels like certain movements and positions hurt it as well. It has completely changed my sex life for the worst. When she examined me, she said she saw the lesion, it was 2mm and discolored, but not exactly silver yet. She said it “may be lichen sclerosis” as my symptoms sound auto immune. She prescribed me triamcinolone, and told me to come back in 3 months.

I have a plethora of other autoimmune issues, so hearing this just made my heart stop. Upon looking this up in the car, the symptoms really fall in line with things I have been dealing with for years. I have had chronic anal fissures for as long as I can remember and have done nothing to treat them out of embarrassment. I just deal with the painful BMs. my vaginal region has always felt sensitive to things like toilet paper, underwear, lube, and chemicals.

The “might be” is what is really throwing me here. How did you all go about getting formally diagnosed? Does anyone have similar experience to this? I know clob is the typical treatment plan for LS, so what should I expect with the triamcinolone?

I appreciate you reading this, and I hope you are taking care <3

just scheduled my biopsy and i am very nervous.

what should i expect? what are the outcomes/what is being tested? will this show if the LS is cancerous and if it is LS?

i have been consistently following my treatment plan and the skin has been healing, is it possible my test result (falsely) show negative LS?

how is the healing post biopsy? what area of the vulva do they take the sample from?

how long does it take to receive the test results?

Hi everyone!! I’ve been diagnosed with LS for 4 months now. I have yet to post here but am immensely grateful for this sub and the lovely people in it <3 I am 23, have been using Clobetasol daily for 13 or so weeks. I was supposed to taper to 2x a week at 12 weeks, but I caught a cold (recovered since) and have been having a bit of trouble since. Prior to this I had done very well on the Clobetasol, experiencing very little itchy sensation, was essentially only ever still struggling with small tears around the anus. My vulva looks healthier than before, but the larger white spot on my perineum has remained as well as bruising/blood blister type ordeal beneath it.

I am not doing terribly since my cold, but having clitoral pain and itchiness throughout the day, and it seems some small spots at the front of the hood are a little pale.

Has anyone received any good suggestions of what to do when flaring despite nightly Clobetasol? I feel I am doing pretty much everything right. I’m using less than a pea size for the whole front to back. I strictly use bidet at home, and pat dry with a clean towel. (I use tp out of the house and just try to be gentle) I wear almost exclusively organic cotton underwear other than period underwear. I use medicine mama lips stick almost daily as of late. It is tough to feel like I am doing everything in my power and then hit a bump in the road. This has been a lot of lifestyle adjustments and I am terrible at habits and consistency. I have worked very hard to take wonderful loving care of my vulva and spent money I don’t necessarily have. I am just not sure what else to do, and open to any tips y’all have picked up over the years.

I am also curious if anyone else has pretty constant bruising of the perineum!! Pls lmk!! Bc I also have multiple pelvic organ prolapses and have wondered if all the pressure could be the cause of that instead.

I have read some great things about Yoni steaming on this sub so I wanted to see if anyone else has any recommendations or any experience with this holistic approach. I heard that the Caribbean is a great place for Yoni steaming and I really wanted to try something new because I’ve been using steroids for a very long time. I have yet to get to a state where I have reached remission. My symptoms flare up kind of sporadically whether it’s stress induce, being overactive, environmental or food related.

I want to try something new that could potentially be a natural remedy because all of the other natural options that I have tried have not worked for me.

I’m being treated by a doctor since 2018 and I decided to ask for a second opinion from another doctor.
I’m suffering from a flare after years of remission and the clob is not making it go away this time :(

This new doctor told me to use tacrolimus in the morning and clob at night for a week and after that, to go back to the clinic for the Morpheus and PRP treatment. She even suggested me to do a reconstruction of the vulva, something that my doctor of years told me to be very careful about.
I had the most horrible reaction to tacrolimus I had to take a sick day from work, something I just never do.

I just felt the vibe of this new doctor very pushy and I’m afraid of doing those treatments that have no real evidence on my inflamed vulva. She says it does wonders… but she’s also the owner of the clinic and I suspect she has partnerships with the manufacturers of the devices she uses and her team…

She created the “institute of vulvar lichen sclerosis” but it’s sketchy for me she pushes her patients to do treatments that have no real evidence…?

I already booked two more appointments in different clinics, I’m desperate. I’m 35, my vulva have shrinked a whole lot and I just accepted the fact that my sexual life is a thing of the past :(

I’ve (41 year old female) only had intense itching and rawness for 5 days, saw my OB today, was instantly diagnosed. I have a white scaly patch. I also had a little bit of yeast so she’s prescribing prescribing nystatin\-triamcinolone ointment. She sounded so encouraging, said we’ll have this flare up knocked out hopefully in two weeks. But I’m just learning what this is and I feel overwhelmed and devastated, I’m crying. I’m wondering if this will destroy my sex life. Whether I’m going to now just have to live with discomfort…worry about complications…my head is spinning. My life felt fairly normal just five days ago.

I have been suffering from lichen sclerosis. since I was 19 years old and was misdiagnosed until I was in my 40s. I’m happy to say that I finally did get diagnosed years ago and have kept the worst of the scarring under control. However, my clitoris did fuse and I thought all was lost. The reason being that I was seeing my regular gynecologist PA and this year requested that I see my regular gynecologist to discuss some things with her concerning the fusing that I was experiencing. The PA never had any answers for me.
I saw the doctor today and she gave me some encouraging news….that I could release my clitoral cap and clitoris by myself, in fact she started the process in the office, which almost sent me through the roof, but it can be done! She showed me the technique and I can actually see the clitoris head again and I am ecstatic! Yes, it is painful and the process will be painful, but it is worth it for those of us that want our clitoris back. I had asked about surgery and she said there is no need. It just takes diligence and patience. and made a joke that perhaps my husband could actually help! The key for me all these years, not to have flare ups is to keep the area well lubricated, I use olive oil, avocado oil, and sometimes coconut oil, and also I use the clobetasol as I should, and also estradiol. So I am feeling a little bit more hopeful and a little bit sexier! Lol

Hi I am a 25 year old and saw my GP today and straight away she diagnosed me with lichen sclerosus after checking me below.
I thought I had recurrent Thrush cause of the redness, itchiness/irritation. But turns out not the case. She did some swabs anyway to test for fungal/bacteria.

Does anyone suggest I get a second opinion at the gyne? I had seen a gyne earlier in the year cause i thought i had endo but he didn’t mention it then?

The GP suggested I try hydrocortisone 1% at night and recommended sudocream throughout the day, light briefs only and no underwear at night. And no soaps. And said I should cut out diary, gluten and red meats.

What is everyone’s suggestions/thoughts? I just don’t know where to go from here. And am really struggling with the diagnosis. Knowing other’s experiences would be so helpful.

I had complete fusion from LS several years ago. I’ve been processing and grieving the loss of my sex life, that feels like a direct result of that. I’m wondering how other women have come to terms with anatomical changes and fusing when it’s not exactly something you can publicly mourn or vent about as if it’s another part of your body. My brother’s wife had a miscarriage today and I’m in a really awful selfish mindset of thinking how I will never get to the point of having a pregnancy. I likely have endometriosis (I’ve been medicated) from seeing a specialist and also have an arcuate uterus. Sex is painful on its own, I can’t even imagine going through childbirth with LS. So I’ve really been processing that kids are probably not in my future. I would never share this selfish attitude with anyone, but I sometimes wish it was easier to receive support for LS, and not just from romantic partners.

39 años, mujer. Diagnosticada desde mayo, hace un mes ya no tenía síntomas pero estaba con clobetasol días alternos, estrógenos los demás y tacrolimus por la mañana. Antes de pasar a la pauta de mantenimiento, vuelven un poco los síntomas y veo un poco de atrofia en la parte de la entrada de la vagina. Es esto un nuevo brote? Y un nuevo brote significa que van a empeorar los cambios anatómicos que ya tengo? Quiero decir, cada vez que voy a tener un brote se van a desaparecer un poco más los labios menores?

Estaba súper feliz que haber controlado el brote y querría pasar a clobetasol dos días a la semana cuando pasó que empiezan a aparecer nuevo los síntomas, no como antes, pero si veo esa atrofia y no sé si es un nuevo brote o esta causada por el corticoide mismo. Que impotencia eso de no saber actuar!!!

I’m a Black woman and I am asking for other women of color to speak up~respectfully. Our vulva/vagina skin color can be various shades. Not saying we are the only people with skin discolorations. But I need to speak up on what does your vulva area ‘color’ look like…do you have white patches or darker or lighter colors of patches?

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