Young with LS Symptoms. Advice Needed

Posted , 5 users are following.

Hi all! i’m 19 and have been experiencing some unsettling symptoms and would appreciate any advice as i’m worried. I never had any issues with my vagina before. In fact i had painless sex for 2 solid years in a relationship with my ex. The symptoms started for me about 3 months ago-burning, itching, dry, cracked, and red vuvla. The next day after symptoms started i had sex and split at the fourchette area (which has never happened before). Then got in to see my gyno and got tested for every STD including herpes. All negative (i have very bad anxiety so this was a relief, especially bc my ex was a cheater). Ever since then, i tear every single time i have sex. I also experience irritation, whitening, and fissures of the anal area (tmi). Now i am noticing my clitorus looks almost “melted” into my labia majora. My inner labia has shrunken to where you can see into my vagina without having to spread much. I’m extremely dry, itchy, and my labia majora seems wrinkled, however i don’t have white patches. i know some women don’t get them. but I have been using coconut oil every night on my vaginal and anal area which has helped but i’m still scared. I was recently diagnosed with Hashimotos and the thought of having another autoimmune disease really upsets me (i heard there may be a connection between the two). Do my symtpoms sound like LS? And does anyone have some advice to calm my nerves and/or what i should do next? thank you xo

0 likes, 16 replies

16 Replies

  • Posted

    So sorry to hear you have LS at such a young age. Your whole life is still ahead of you.

    Did you have a biopsy done? Did the Gyno prescribe Clobetasol?

    That's usually the first thing you use. I gave it a month until

    it improved a little. It thins the delicate skin, so don't use it too long. Finding this forum was a blessing. , I started using a Borax solution. 20 MULE TEAM BORAX in the laundry isle.

    Two teaspoons of Borax in 4 cups of warm water, stir until dissolved . I put it in a spray bottle

    or a pop bottle & wash the area every time I go to the bathroom. Don't wipe it dry, just pat it

    then after maybe 10 or 15 minutes apply ORGANIC coconut oil (one with no coconut bits in it)

    Keep this up, it's not a cure, but in time the itching will get less & less & the shrinkage & the rest of it will improve. This has helped a lot of sufferers of this horrible disease.

    I haven't used anything now for over 8 months. I have occasional itching, but it goes away.

    Another culprit is what you eat. Sugar, whole wheat, other grains, pop etc. I've been on the Keto diet for over a year. It's helped greatly. Lots of additives & preservatives and all the other chemicals they add to processed foods just aggravates the condition. I know it's the Keto diet that helped me. I don't miss sweets or bread or any grains. Cook from scratch & try to buy organic veggies, regular vegetables are sprayed with chemicals. I pray you find something that works for you. There is no cure, but you can keep it under control. It takes a lot of detective work.

    Good luck

    • Posted

      Hi! thank you for your response. After being tested negative for all stds my gyno said it’s probably a dryness issue and recommended KY. This obviously hasn’t helped and i think i’m suffering from more than that so i am going back to her this upcoming week. I hope she is familiar with LS so i can get relief. I will try altering my diet as well. i will update 
    • Posted

      I have not had a biopsy. 
  • Posted

    Hi, I was diagnosed with LS at 19 as well. I'll be 23 next month, it can be quite hard to accept the diagnosis if you get it but its not the end of the world. I had the itching and burning and pain with sex and anal fissures. I found it took a while to get symptoms under control with the steroid cream and coconut oil but im mostly symptom free and get abit of itching when i need to use the steroid cream again but that is gone in a day. The pain with sex for me was a mental thing as i was worried it would cause pain and was tensing up each time. After speaking with my boyfriend this really helped and making sure you are lubricated, i dont use any lube we just make sure it is naturally lubricated.I think Anal fissures were the worst symptom for me i couldnt get rid of them for years, but i realised i needed to make sure my diet was sorted, so increased mt fibre intake and water and made sure i had a bowel movement everyday, and use coconut oil before a bowel movememt to prevent friction. I am mostly healed but will be making sure i dont have too much white bread or foods like pizza which i think causes the fissures to come back for me.

    • Posted

      That made me feel better reading you were young too. i really have been worrying so much. i have no clue how or why this is happening. but i will try what you have suggested. i.t feels good knowing your not alone
    • Posted

      i’ve also been reading that it can eventually cause cancer. I’ve been worried sick over this whole thing.
  • Posted

    What does your doctor think. Around your butt use chafing cream keeps area dry and easy wiping. Also virgin olive oil is good in vagina area. Stay with us we're here for you. God bless Diana

    • Posted

      Last time i was in at my gynos, since i was negative for all stds, she sent me home saying “pick up KY, it’s a dryness issue”. Clearly this hasn’t worked, and i think its way more than that. I’m going back to her this week. I’m hoping she can help me, i will update as soon as i get any info
    • Posted

      OH! Nicole, dearheart, please my  please do read and maybe make a copy of my discoveries about this LS. Most of us here report that most doctors don't know about this illness (it only occurs in about 5%), so we have to become our doctors educators. It is certainly not only a dryness issue. But you can politely inform her of what you have found out from all of us here.  

      The thing is LS was only confirmed to be an autoimmune condition in 2012, but it makes it so much easier to get informed help once they have that info under their belt.  Did I mention already that last december before my doctors appt I found out about vitamin D3 here and took 15,000 Iu over the holidays and that stopped the anal fissures. then I learned that Vitamin A balances high dose D3 so no worries about toxicity AND magnesium is required to get the D to absorb corrrectly.. 

    • Posted

      Thank you so much. i am going to tell her kindly about all that i have figured out. I.t means the world to me to get such quick responses from everyone!  i will try those supplements. also hoping to get in with a nutritionist. will update 
  • Posted

    I also have another question. i noticed deep wrinkles that appeared on my labia majora. they are like indentations. i have never had them before, is that a lichen sclerosus symtpom? They itch sometimes and are pretty noticeable 
  • Posted

    Hi all. i went to the gynocolgesist today and she said it did not look like LS considering i have no white patches. I still kind of think it is. she said i.t was a dryness issue and gave me a bunch of lubricants. i feel like that’s not it.
    • Posted

      Hi i have never had any white patches as i think they appear when LS hasn't been treated for a long time. I would definitely get a second opinion as i had docotrs tell me it wasnt LS and that i had hypersensitive skin only for me to be diagnosed with LS a few months later

    • Posted

      OH Oh NIcole dear... I entirely agree with Jessica, and I;m pretty darn sure all the rest of us women here will too. You need to find another doctor. Everything you have described to us in the last 6 days SCREAMS LS - we all know it... maybe we are the "experts" BECAUSE we have EXPERIENCED it.

      Which type of doctor tested you for Hashimoto's? Maybe he/she can suggest a different second opinion doctor.  I've read here that quite often the dermatological profession recognizes LS better than the gynecological.  

      I know - you are so young.. and so brave. Trust your intuition and act on it. Until you can find a knowledgable doctor/diagnosis, please do feel comfortable to go on ALL the supplements that I have outlined in my articles. You will feel much better very soon and will feel empowered by acting proactively.  To give you more confidence, the list of supplements I found was entirely approved by my highly educated cardiologist (a former heart surgeon) turned integrative Doctor who has written books on these things.   

    • Posted

      Thank you so much. she wasn’t helpful at all, in fact she wrote me another script for herpes blood testing. I KNOW i don’t have herpes. i never had a blister. only tears after sex, i’m really upset. I just need someone who understands and not jumps to std conclusions. I do not have white patches and my anatomy looked “normal” to her, that’s why she said it wasn’t lichen. She also sent me home with lubricants and said it is most likely a dryness issue. She also suggested getting off the pill. 
    • Posted

      Ahh.... well she might be right about the birth control pill, but of course none of us here are endocrinologists. Your doctor who diagnosed you with Hashimoto's would probably be a good person to go back to and ask about that, afterall hashimoto's and LS are both autoimmune diseases and hormones are involved in both. 

      I feel a bit of virtual motherly love for you Nicole as I have a daughter now 33 with a 2.5 year old son, who was finally diagnosed with Hashimoto's only a few years ago.. who I wish I could have gotten through to the pediatrician who years ago "suspected something" and then did nothing about it, and I had no way of getting more info ( before google making research easy. How much easier a decade could have been for both of us... ahhh... smiles... 

      oh... and thyroid issues are highly susceptible to vitamin B imbalances and if your prescribing doctor of birth control pills knows what what they would have told you that birth control pills are known to steal/reduce/deplete several of he B vitamins... see? There is a grand circle here .. blessings..  keep sharing...   

       

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