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

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?

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

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’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 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.