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

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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

    Just wanted to add that i really do think that emotional schock or depression state, stress or just deception ( you know? Like ongoing deception of life has something to do with this) at least that’s what i 🤔 think....

  • Posted

    Your not alone Ninnis, it’s perfect that you put the photos. Here you’re with friends. 🤗 don’t worry it’s gonna get better.... 

  • Posted

    Ninni , I’m so sorry to hear your story . I’ve have only now been diagnosed . I’m 60 and most probably had this for 3 years since I came off hrt . There is so much information on this site I’m sure if you read through it all you will find something  to help you . Just a thought but have you discussed hormones with your doctor ? You had it at the time of puberty and that may have something to do with it . Hormones or lack off have been known to kickstart it . I’m too old now for hrt but maybe your doctor could give you some kind of hormone treatment to help you ( maybe contraception pill ) or similar would help . It’s a long shot but worth investigating , I read somewhere on here that a lady went back onto hrt and it cleared it up but came back when she came off . If you could get some relief  until your older would be great ,  good luck with your journey , anything is worth a try until you find which one is right for you !! Oh and everyone raves about emuaid which I am going to try after I’ve tried steroid ointment as the doctors prescribed ,  cbd oil may be another one you could try , that would help with your depression as well . I’m going to try everything one at a time to see what works . 

    • Posted

      Hi there Jacqueline and thank you for your message,

      I definetely think I'm in hormone imbalance. Wheter if I have not enough or too much hormones I don't know.

      I am very new to this, and I have a lot to learn. May I ask what hrt & cbd stands for?

      Do you know how I check how my hormone levels are? Is it through blood test?

      Best regards

      Ninni

       

    • Posted

      Hi Ninnis 

      First of all you can get hormone levels checked by your doctor. Hrt stands for hormone replacement therapy. And cbd stands for cannabis oil . But the harmful stuff is removed and leaves the  medicinal properties which helps with all sorts of pain , epilepsy, ms , Parkinson’s , anxiety , depression and many more . Hope that helps . 

    • Posted

      HRT stands for hormone replacement treatment

      CBD is a cannabis product. 

  • Posted

    Hi Ninnis, Really sorry to hear about your condition.  I do think seeing a doctor is the first step to get some effective medication to start.  There is lots of good advice on alternative solutions to the management of LS. I'm sure in no time you will be looking better and better.  I too went to a traditional Chinese acupuncturist who also gave me herbs to take and promised me he could help.  $1000 later, I'm not any better.  But it was worth trying. Everyone's body is different and not everything suggested will work for you.  We are all experimenting and trying to get to a happier place in management.  Clobestol has really worked for me, but because of the side effects, it is not good to be on it all the time. It has taken away the itch immediately but doesn't help with fusing, which I now have.  Good luck and maybe when you have sought some professional help to start you will be able to destress a bit.  LS is very stressful, but once you find what works with managing it, you will hopefully learn to live with it and deal with it on those bad days and know it will pass.  You have found friends here.  This site has been a lifesaver for me in finding alternative solutions and not feeling alone.  Take care of yourself.

    • Posted

      Hi Susan!

      I've seen two different western doctors and sadly it was out of their league. They only prescribed me stereoid cream and told me to ' learn to live with it '. The cream did nothing besides irritate my skin even more.

      It's so frustrating living in Sweden, doctors are very limited in their knowledge. And my disease is nothing usual in this country, nor do they know how to cure it

      I am going to look up Clobestol, everyone seems to be talking about it 

      And yes, not only am I a person who thinks and worries a lot, I live in a very stressful enviroment.. soo.. that's not helping me at all at the moment. 

      Best regards

      Ninni

    • Posted

      Use the Clobestol sparingly and mix it with something Emuaid Max, which you can get online.  Doctors know very little that is why there are great suggestions here for homeopathic solutions.  There are alternatives to Clobestol that may help you.  Just read through the information on this site.  You will get relief from one of the suggestions.  Take care.
    • Posted

      Ninnis 

      I got diagnosed at 25. I saw that you were prescribed steroid cream but it was causing irritation. Me too!!!  My doctor decided to give me the same steroid but as an ointment instead. It was messier but made loads of difference; no irritation.  If you check out clobetasol or halobetasol; ask for an ointment instead of the cream. The cream has alcohol in it so it can cause more irritation on already crazy irritated skin. 

  • Posted

    Dear Ninnis,  HI I"m Nancy, age 72... and I remember clearly that my now 33 year old daughter used to have a lot of depression around puberty. For you it's been extended. The most well known nutrition in support of depression includes the Vitamin B complex and extra Vitamin B-12; also magnesium.. AND vitamin D which your one doctor told you about. 

     As a matter of fact when I realized I had this LS about 7 months ago i started researching online night and day. I finally wrote up what I found out which you might find helpful. I was particularly interested in knowing what the co-factor were to vitamin D3.  Your doctor probably didn't know all the other supplements that complement the D3 (be sure to buy the D3 form).  Please read the link so you know the other supplements to help you.  I was out of the worst of the itching within days of taking 15,000 IU Vitamin D. I wonder what strength D your doctor prescribed? I now take 5,000 a day and base all the other supplements on that dosage. Many of the other supplements are natural antidepressants by the way.

    I agree with Guppy that you seem to have more than just LIchen sclerosus affecting your health.  Guppy uses the term thrush, which refers to the type of candida infection in the mouth area.  A yeast infection in the vagina is simply called candida in English - meaning candia OVERgrowth.  Ninnis dearheart, you have a very bad case of candida overgrowth. It can be fixed with over-the-counter medicine (at least it is in the United states) called Monistat.  That will stop the bad odor down below. Talk with your pharmacist let him/her know that you've had it for years without seeing a doctor so they'll know what strength to give you etc. 

    Also as you read here you'll realize that you must must must go off of every type of sugar entirely - at least until you no longer have any discharge and odor.  The coated tongue can be from several things, including dairy products that aren't being digested.  So NO SUGAR; NO DAIRY. 

    You might have read up here by now that there are quite a few emollients that we all use to soothe the pain of LS.  I recently discovered Aloe Vera gel. Another one is coconut oil, or olive oil. Sometimes we also use baby's diaper rash ointment with Zinc ( I do especially on my anus when it needs it.)

    HEre is the link to my article: 

    https://patient.info/forums/discuss/pathway-into-and-out-of-autoimmune-diseases--661033

    Blessings, let us know how it goes for you. 

    • Posted

      Hello Nancy,

      and thank you so much for your informative answer. 

      It's very frustrating here in Sweden with the medical part. Doctors are 9½ out of 10 not really bothered with the patients condition. Not only does it take months to get an appointment, but the get an answer/result too. They've no interest what so ever and it frustrates me so much.

      I sure  have to visit doctors several times more. The hard part is convincing them to let you take blood test and urine test. I do think I have Hormone imbalance. 

      But the root to everything, was bad diet, severe depression, got extreme fatigue, stress, trauma, got zero nutrients etc. I'm SURE I not only have acute low vitamin D-levels, but low on all other nutrition levels.

      The doctor prescribed me a container of 250 tablets called ' Divisun 800 IU - Vitamin D3 '.

      I looked around on the internet, and when someone like me have acute low levels of Vitamin D, I should be taking around 5000 IU ( I think? )  

      In my perspective, I dont think taking 5000 IU for a long period of time (in my case) will harm me.Or will it?

      I've written down all advice you kindly have given me. And yes, I've stopped with dairy products, gluten. no white processed sugar what so ever. And I rarely eat any red meat to begin with. 

      Do you mean you took 15000 IU vitamin D / a day or you took 15000 IU within a few days and the itch disappeared?

      I'd no idea about the candida thingy, but it sounds like it. The horrible oozing smell coming from vagina.. ughh. 

      How does the Monistat medecine work? I did find it on ONE website here in Sweden, - thank god.

      Does the Candida usually disappear after othe treatment, or do I have to repeat it?

      I'm gonna look into the link you sent me right now,

      And thank you so much for taking your time.

      Best regards

      Denice

    • Posted

      HI again, Denice ~ 

      Oh! so my mistake.. dont' go spending extra dollars on american brands Monistat or Diflucan (Guppy mentioned that one too, I had forgotten those are the same medicine). So what you want to find in a Swedish brand is the chemical called fluconazole. 

       oh gee, girl! grin I don't remember the dosage but that is why I suggest going to your closest drug store/pharmacy. THEY will know what you need. It does come in different strengths - you might as well take the strongest! It used to be inserted in your vagina (easily) but I just saw that there are oral one pill dosages now, which I'm now remembering is what my daughter took when she asked me about her health about 10 years ago in college).

      SO for the LS, ONce you've read my whole link you'll see that I discovered that is it very safe to take high dosages of VItamin D3 for at least a month before you'd need to be sure to start balancing that with Vitamin A. they work synergistically.  so, yes, I took 15,000 a day for several weeks or a month before dialling it back.

      I agree about your hormones as others have also commented. Many of us are aware that our thyroids are involved with this LS. So sorry , it'll ake a few months to get a doctors appt for that. BUT, not to worry, there are many herbal choices to read up on that can help.

      THere are tohr women here who know more about herbal remedies who can suggest things. 

      also besides the vitamin B12, also find out about iodine and if you can get something without a prescription. 

      AH! an more more thing... you'll see at the end of my article that Melatonin is also listed.  I found out that not only does it help to regulate our circadian rhythms  make us go to sleep to get enough of it) . but guess what? apparently it also helps with leaking urine control - go figure! 

      (although my guess is that your urine urgency is more connected to the major candida overgrowth. Hopefully you will be very pleasantly surprised when the fluconazole kicks in.  hugs...

    • Posted

      Hi Ninnis, remember to get something for oral thrush too.  It is called Nystatin.  I would take these asap as it won't harm you and you need to rule out the possibility that you dont have systemic candida in your body. 

      I have had systemic candida and I consider it to be dangerous as it is an insidious condition causing untold damage to your body..things dont work properly when you have it and it can bring on a terrible LS flare up.  When I had systemic candida I also lost some weight too as it is imperative that you dont touch sugar..which feeds it.

       

    • Posted

      Since I don’t eat much red meat or fish, I’m always vitamin D deficient and my Dr gives me 50,000 IU that I take once a week. So higher doses can be taken. 
    • Posted

      Hi Guppy,

      Scrolling through the thread I was 100% sure I already responded to you. Seems like I only did it in my mind. BUT, i do want to say thank you so much for taking time to letting me know about the oral thrush. 

      I have never ever considered it until you mentioned it.

      im gonna look it up more!

      best regards

      ninni

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