My Severe Case - Lichen Sclerosus [LS] With Pictures. I need YOUR help.

Posted , 17 users are following.

If you are reading this sentence, please continue. I need YOUR help.

In this submission, im going to tell you how I think I got it, a short backstory and I will also share my very intimate pictures and so on. 

So I will try to make it all very short and clear as possible. And thank you if you're taking even a minute to read this or if you're giving me some advice. 

To begin with, I am a 22 year old female.  I do not smoke, drink alcohol or had any sex. (If that even matters.)

When I was 14 y/o I got into a really depressing state. Due to trauma, stress which lead to my depression I've had for years now. 

At 15 I got into really bad habits. I stopped with all my hobbies such as martial arts, swimming, singing. I stopped going out from my house, I dropped out from school.  Didnt see the sun for weeks sometimes. Didn't leave my house for months. 

My sleep got affected fast, and all the sudden I could not sleep. I was worried 24/7.

And from that, my anus (the outside) started to itch tremendously. The itch never stopped, but it was worse at night.  

I scratched my bare raw skin, and I could feel my own skin layer fall off. And from that, I noticed pigmentation change

The itching grew from anus to vagina/vulva - around and not inside. And from that it grew to my groins. And there I was, for years, trying to substain whatever condition I was in. But I never stopped scratch my skin. I scratched minute by minute, hour by hour. Due to the horrible itch I can not sleep at night. And I can say I havent had a good night sleep since 7 years ago.

I am mad at myself that I stopped care about myself years ago. I am mad at myself, I didn't do anything sooner about it. I was and still am - in a bad psychological state, also emotionally, physically, mentally. This has affected me in every single way and I can't live like a normal human being anymore. 

I can't work, it burns, itches, I can't wear pants, jeans, leggings, or underwear. 

Each day I can slightly touch my for example. my groin - and a skin layer falls off in my own very hands.

I also can't pee normally. I can not hold my pee and I have peed myself several times. I even have to have a potty right next to my bed because when i gotta pee, there's no time to run to bathroom. It sometimes hurts when I pee too.

Besides from my horrible itch, that is mentally draining, some other strange symptoms is:

- White or yellow coated tongue in the morning.

- Awefull breathe no matter how much I brush tongue, teeth, mouth overall.

- White fog in my yellow pee.

- MUCUS/Phlegm stuck in my throat every morning. 

- White pubic hair: Yes you heard it. I've started to grow white pubic hair on vulva. 

  I also have started to grow white hair in the back of my head/neck area.

- I gained 30 kgs within a year from when I was 15-16 y/o.

-Along with that, my anus/vagina oozes out.. how to say it.. a rotten smell? Its super damp, and smells rotten. I've also noticed small scarring on vulva..

I've lived in this horrible draining condition for 7 years without seeking medical help.

And I then decided - it's time for a change.

So, I recently went to the western doctors. They took some blood tests and they said nothing was wrong with my liver or kidney. They were perfectly healthy. I also took urine test, and nothing was wrong with my urine.

The only thing they told me was that my Vitamin - D levels was really low. And he prescribed ' Vitamin D capsules '.  He also did mention I have low blood pressure.

He mentioned that I " might """ had an overactive thyroid. And if it's anything serious he would call me in again to take some other tests. But I never heard back from him.

So I went to another doctor and showed him my little 'situation' down there between my legs. He had no idea what it was, but he just prescribed an cortison cream to just cool it down and he told me that I've to live with it. 

I'm also gonna add,  around anus and vagina area. It is either VERY dry or VERY moist. It feels like im always heating up down there.

I later then, instead of going to hospital - I went to a clinic to visit a woman who practice Traditional Chinese Medecine, and that's what she has been doing for 30 years she said. 

She examined me, took my pulse, looked at my tongue, eyes, and then she took a look at my anus/vulva situation.

My tongue was white/yellow coated. And so was my eyes - yellow. 

She told me I'd a condition called ' Damp Head '  and then she mentioned that I have

Lichen Sclerosus. 

We barely understood each other due to the language barrier, but she seem to know how to cure it. She mentioned: capsules, chinese tea/herbs and accupuncture. 

I asked her, how long does it take to cure? ( Which I realised maybe I shouldnt've asked)

Since I've had this skin conditon for years, it perhaps will take years to cure it..

She set up a package for me: for each month, 4 bottles of chinese medecine capsules, 4 sessions of accupucture, and chinese herbal tea. It was going to cost me: 1200 USD. 

And this she was assuming, I was going to be able to pay, for as long as its going to take to cure it. 

I am now a student, and I certainly can't afford paying 1200 USD each month.

She then gave me another offer. Two bottles of chinese medecine capsules, (will last 2 weeks) That was going to cost 200 USD.

I was amazed how pricy it was. How do people afford it? I then accepted her last offer, but that was it. I never returned to her. I went home, searched on the internet of the medication she gave me and I found the exact same on the internet for 8 dollar per container..

So now Im sitting here, the western doctors don't recognize my condition, nor did they bother to even look deeper into it. They prescribed an cortison cream and that's it. Which made it all more inflammed by the way.

I live in Sweden, and the traditional chinese medecine practitioners are very limited. 

I don't know what to do, who to seek help for.

So, If YOU have any advice, or any experience - please tell me more about it.

Do you have any recommendation for any doctors in Traditional Chinese Medecine?

I am willing to seek medical help abroad. I am going to change my diet completly. And I'm going to put myself first in all cases from now on.

Now to my questions,

- Is it possible to cure Lichen Sclerosus completly?

- Can my skin pigmentation ever go back to it's normal or do I have to live with a red/white anus/vulva for the rest of my life?

If  YOU recommend any herb or ointment to stop the itching - please do.

- Is there any medication/ointment/herbs that can make my pigmentation/skin grow back?

- Should I be taking any supplements?

Please fill me in with suggested diet, supplements, what to avoid, what to do, herbs and ointments that worked for you. And if you do know someone who practice Traditional Chinese / Internal Medecine and you think he/she can help me -  feel free to let me know who the person is.

Now to this sumbission I've attached some pictures of my anus, vulva and groin. 

And yes, I lauged a bit cause it was very hard to take proper photos by yourself.

I deeply apologise if  you got slightly.. traumatized.

Now lets be all nice towards each other, I only came here to seek for help, I am desperately looking for any type of help & advice.

And during my journey, if anything improved or.. less improved. I'll keep ya'll updated.

Best regards

Ninni

2 likes, 56 replies

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  • Posted

    Hi Ninnis! You will be glad you found this forum. We are all in the same boat with LS. You have had a very stressful time, and I think stress has a lot to do with having LS. I probably had it for years and just thought I had thrush (candida) down there...whatever, it went untreated.

    All the folk on this forum are open to trying anything that might help them get it under control...you will have to try things for yourself to find out what helps you. Don't get depressed though, we are all here for you. 

    I think your priority is to start putting  your own health first. Can you not approach your doctors practice and ask for an emergency appointment? Then tell the doctor how worried and scared you are about whats happening?

    I live in Scotland and had never heard of LS until I was diagnosed by the hospital consultant. I was handed two sheets of  paper with some information on LS......end of !  I only get to see that consultant again if I am referred by my GP. I was prescribed Clobetasol and it helped with the flare up, it doesn't help me any more. I am using a herbal remedy and at the moment I'm clear and its wonderful!

    Keep reading what the others are using .  Watch your diet, eat healthily, drink lots of water and be kind to yourself!

    best wishes!

    • Posted

      Hi Cleo,  Congratulations on being cleared up!!!!  What herbal remedy are you using.  Thank you.

       

    • Posted

      Hi Susan. I bought good organic castor oil, lavender and frankencence. Mixed 10 ml castor oil, 5 drops lavender oil and 5 drops frankencence. I let it stand for a day and applied it morning, night and after using toilet... Slowly it worked. I was bleeding and very sore, could hardly touch myself. All healed now. I know it will come back, but this is the first time I've been free for a long time. And it is lovely on skin..

    • Posted

      So glad to hear that worked for you.  I had tried the castor oil mixed with lavender oil and lemongrass oil.  It burned some.  I may go back and try it again.  Thank you.  I have found ALoe Vera Gel and Tumeric are also good. 
    • Posted

      What herbal remedy are you using Cleo  ?it would be interesting to know , thanks . 
    • Posted

      Hi Jacqueline. I put my potion down in my reply to Susan. It's working for me (at the moment) regards.x

    • Posted

      HI Cleo.... good mixture I'm sure.  I had recently read about frankincense (Boswellia) and had bought some essential oil last week to add to my Aloe and Tumeric mix. Haven't taken it enough yet to tell if the addition makes any difference. THANKS for sharing your  good experience.

    • Posted

      Hello Cleo!

      Sadly i've been very stressed, depressed, traumatized and the whole chibang for over 8 years.

      It started when I was 14 and it's been a mess since ever then..

      Thanks for your response!

      hugs

      Ninni

  • Posted

    Ninnis - Also check out the infection called Trichomoniasis.  Apparently it is the one vaginal infection that is known for foul odor. check which meds fixes that one.. I don't know if it can be bought without a prescription... against get to the help desk at your local pharmacy. 

  • Posted

    So sorry you have all this going on. I have had this condition for years and the past year or so nothing seemed to help. I then found this forum. One if the first things I did was use olive oil. After a day or so my skin started feeling much better. It does help to remove the white stuff(I call it plaque) and new regular feeling skin will once again be in that area. It does take a bit of time but everyday feels better. As a previous poster said take an antihistamine to stop the itching at night. In the US, I take Benadryl, the stuff knocks me out as well as controls the itch. You might also want to try a topical when the burning is really bad so you can go pee,etc. I have used vagisil &/or a hemmoroid cream to numb the skin up. It does give some temporary relief. These should provide some help before you get to a doc for the clobesteral. Good luck and know you are not alone.

    • Posted

      HI 33Beth... interesting comment about "removing the white stuff ( plaque).  Exactly how have you been or are you "removing" it? thanks

    • Posted

      Hi Beth , I would interested to know how you removed white patches too . Thanks 
    • Posted

      Hello there Beth and thank you for your reply.

      So there's a chance to remove the white stuff? With other words - grow back the skin layer to its normal pigmention. Did you do it by only using olive oil?

      Best regards

      Ninni

    • Posted

      We might be talking about two different skin conditions...I get large white patches of raised skin. With the olive oil the skin seems to slough off. Unfirtunately I have a tendency to scratch which does help remove the white patches.

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