Hey everybody, I'm 18 and I have just been recently diagnoses with LS. I must admit I am nervous about the diagnosis because my college obgyn said she thinks LS but she wasn't sure.( Prior to that I had yeast infection that would not go away and my perineum was tight and damaged with white shiny patches. ) She suggested I go see a dermatologist that specializes in vulva disorders. Due to the lack of doctors with that specialty in my area I just went to my obgyn at home. She said she didn't see anything concerning but I told her how my clit was super itchy at night, my perineum had dry patches, my vagina felt overall super dry, and after telling her what my campus obgyn said she agreed with her. Then my obgyn prescribed a cream called Clobetasol.
Now the dry patches have spread to my anus all the way up to my butt crack and I even had an anal fissure. Also it's like a dark figure 8 kind of path that extends from my perineum to my anus. This has been very tough because my vaginal appearance is completely being altered and it's really embarrassing.
Anyways I am making this forum for young girls/women as well as African American women (I didn't see many pictures of black women who had LS so I think it's helpful to have some examples. So I am attaching pictures so that I can help other young girls like myself.
The first picture (one with green underwear) was the first time I noticed the shiny white patch on my perineum in May and I just thought it was dry skin.
The second is how it looks now.
The last is my anal area.
Hi there, from your pictures you certainly have LS as far as I am concerned. Looks like my disease which I have had for 18 years. I was treated for one yeast infection after another. Itching was severe. I developed anal fissures too. The shiny white patches appeared. It spread from my genital area to my thighs, groin and abdominal area. Within two years it also spread underneath and covering my breasts. This past year I now have patches on my shoulders, neck, cheeks and around my eyes. It but sometimes and itches. UVB light therapy is all I have seen remarkable improvement from. Ointments and creams do very little. However, my eyes are covered during the UVB, so nothing is helping me in that area. I am going back to my dermatologist for his opinion.
Not everyone has it as bad as I do. My specialist has told me that I am a rare case.
Take care and keep reading on this site. There's a wealth of knowledge on here from sufferers like us. Hugs.
That should read " it burns and itches"
Thanks so much for your support. It's s devastating dealing with this disease especially because the first signs appeared in May and I ignored it. Some days it really isn't super noticeable but other days it looks horrible and it makes me sad. I am hesitant to use the cream because I know that steroid creams are not the best for your vulva area.
Hello, first of all, you are brave to have shared your pictures and I thank you, because I am an African American and have not found any pictures of black women with LS. I am 58 and was diagnosed in Nov 2017 via a biopsy. I am fortunate to not have the itchy areas and thinning of the skin. I use Clob, (though not daily) and coconut oil or Emu oil as a barrier. The look of my vagina has changed. Think of someone with Vitiligo, that is what the lower part of my vagina and anal area looks like. My clitoris has all but disappeared. I struggled a lot, when I was first diagnosed. Now, I'm not going to say that I have totally accepted my condition, but I have accepted the fact that I have a new "normal", when it comes to taking care of myself. I am so Thankful to have found this forum. I learned more about taking care of myself from these lovely ladies, then I did from my doctor who prescribed the Clob and that was it!! God Bless.
Angela from St.Louis
Hi there, Yep that's LS for sure. Nobody wants to use steroid cream on their Vjay but the best advice I can give you is to use it now to clear up whats happening and to stop it spreading and getting worse. The itching that you describe in the clitoris area needs treatment now and only Clob does that effectively. It will get worse if you dont treat it. I always have problems in the clitoris area, it fleels sore to the touch, itchy, hot, painful etc etc. I used the clob cream twice a day for a week and that was it!! and that was months ago. Then, once you have it under control, with no white plaques of skin etc you can focus on looking at other alternative ways to keep it under control..
Take a look at the thread on here called "an experiment with borax" Read as much as you can about LS as you need to be your best advocate for this conditions as most docs know nada.
One thing I know for sure and thats that sugar causes some nasty flare-ups for many woman, and so its best to try to limit sugar if you can.
I am just going to add one thing. I think that you should use the steroid, if only to get the itching and burning under control. I was initially prescribed twice per day, for 30 days, the once a day for 30 days, then only when I need it. If you chose not to take the Clob, then your doctor may be able to provide a steroid that is not so strong. Also, on the rare occasion that I have itching, I have a portable bidet (that fits on my toilet) that I soak in with a mixture of baking soda and water. Ok, enough of my preaching🤗
Hello Angela,
I'm sure most women can agree that it was so difficult finding pictures that were close their symptoms, but as you know it was even harder to find brown or black women with LS. Overall some pics were really severe cases and I was like I definitely don't have it. Other's were very mild cases so I thought I was having some kind allergic reaction. So although I'm obviously not happy that I have LS, I am happy that I have pics of my early symptoms to help others diagnose it earlier than I did.
My family and friends have been very supportive which as helped me not sink into a depressive state, but I still don't have total confidence in myself down there anymore. I will eventually get there though!!!!!
I hope your situation gets better! Hang in there 
Hello Guppy007,
Thanks for your advice! I will continue to use the steroid cream and I hope it will improve. I did not realize how thin my perineum got until I compared the pic from May to now. I am lucky that it's not really itchy down there, my clit is the only place that gets super itchy and uncomfortable. I will do my best to limit sugar which should be too hard because I'm very disciplined when it comes to dieting. I am going to checkout the thread you recommended right now.
I hope your symptoms continue to remain under control!
Dear LiveLoveLaugh, so sorry to hear... and yes, thanks so much for our sharing the situatation with dark skin. There are solutions! I'm 72 and was only diagnosed last month though I probably had it for some time be fore it hit the intense itch stage... SO, dearheart I've been researching every which way for a week ormore and will now post the step by step SCIENCE that i have found that cearly defines LS an auto immune disease. This means that an autoimmune protocol and anti-inflammatory diet and protocol WIll stop this thing. I too very VRY luck to ave foudn this site just before Christmas and read one woman who had discovered from a Naturopath that VITAMIN D deficiency is a worldwide epidemic and is alsmot a sure thing with ANY autoimmune situation. So, what i discovered from my integrative phsycian who DOES know whats what - he mentioned that anyone like myself with a hypothyroid antibodies (which most people don't know they have) are not able to convert the Sun rays into vitamin D in the body!! I also learned from intense reading that dark skinned people also have a much harder time converting sunlight into vitamin D. SO. my dear best friend (african-amerian) who was really really sick with the flu last week, a nurse who swears by our integrative doctor, was told to ake 40,000 units of D - YES 40K. So don't worry bout taking too much (of course she was fighting the flu and is way overweight so our LS case probably doesn't need that much).. but I brought the itch right down to almost gone within 2 days of 15,000 vitamin D3. Please do look up other comment about vitamin D on here. BUt I will post the whole thing as soon as I can this evening. I'll start a new thread for so everyone will find the protocol validation that I researched.
Thanks Nancy for your advice! I will look into integrating more vitamin D to hopefully combat this disease
Well I m A lot older than you and I went to a gun Dr and they told me I have ls. I knew I had been itching a lot but thought I had a yeast infection she tested me and told me it was LS and she said any age could get it. I just went through terrible menopause and now I got this stuff. I feel like I can win at anything. But now when you got to go to the bathroom it burns like crazy. Hope yours get better soon.
I should have said a gun Dr sometimes my fingers just walk to fast.
Genocologist doctor. My tablet messing up.
Hi I don’t have much advice to add as you have lots already. I just wanted to add that you are an extremely brave lady and seem way beyond your years.
You should be very proud of yourself.
This group will always be here when ever you need support and I’m sure with your attitude you will be able to help us too. Xx
Hi there, Glad you have found the forum. The figure of 8 you describe is text book LS. Sounds like you have finally got a good doc and the clob should stop it in its tracks. We're all different but I do know that with young people treated LS can go into remission for many years and with good management you might be able to stop it in its tracks and reverse some of the damage. There's a lot on this site to read and digest and please remember that even though it feels bad now, finding out is the way to get early treatment. Lots of us on here have much more damage because we didn't get a diagnosis until late in life. Every best wish.
Hello Livelovelaugh, I'm so sorry you have joined us, but this really is a great place to share ideas. We are all different so everyone will post how they take care of themselves, and you can try out things and work out your own care programme. It takes a while to find what works for you, but I forget, for days at a time now, that I have LS, and my care routines just fit into my daily life.
Clob is your friend, it will halt progress. It is strong but that's what's needed at the start. Don't be afraid of it. A very small number of women have had a reaction to it, but many people here swear by coconut oil and I have a reaction to that, it's a long process finding what suits you personally. Have you watched the video by Dr Goldstein? Here's a link from this site https://patient.info/forums/discuss/dr-goldstein-lecture-271556
One of the arguments against using Steroids is that it thins the skin, but LS is thought to thicken the skin, so the thinning element is part of the cure. There's so little research done, which is why this forum is so good. We share our own successes.
I have had good results with borax, as have many women here. Here is the link from the discussion https://patient.info/forums/discuss/an-experiment-with-borax-502021 I used Clob at the start and it stopped it in its tracks, though I rarely use Clob now, and my specialist doctor is happy with that. If you do decide to go free range with your treatment, do stay under a specialist for observation, even if you don't tell them what you're doing. Just as an insurance policy. Keep the area moisturised; find two or three different oils that you like and rotate them, your body gets used to it if you stick to one thing only. People here swear by coconut oil or emu oil, I like avocado oil with a few drops of chamomile essential oil in. Experiment, buy nice things, treat yourself, though stay away from fragrances and soap, they can be irritating and drying. You can get specialist washes for eczema, though check for fragrance. I am in the UK so can't suggest what I use as I don't think you can get it there. There will be a discussion thread on this.
Hugs to you, and things will get better as you find your own routines and things that work for you. All the best to you.
Bridge
Thank you for your advice and support! I have been putting coconut oil on the dry patches. I just wanted to know if it was okay to use Clob on my clit. And do you think shower or baths are better for the skin?
Thanks for your words of encouragement, it gives me great hope knowing that it can go into remission.
Hugs to you
Thanks Justine for your kind words, I really appreciate the support from the people on this forum.