1. Community
  2. Women's health
  3. Lichen Sclerosus

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

Posted , 17 users are following.

Guest
Guest

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

56 Replies

Prev
  • Joannwilson
    Joannwilson Guest

    Posted

    You can also get betadine at a regular store or pharmacy. You can rub it full strength on the affected areas and also dilute it for a douche. 

    Benadryl generic is called diphenhydramine, so it’s cheaper than the name brand, especially in grocery stores. 

    I had a severe yeast infection once due to antibiotics I had to take prior to

    Having a hysterectomy. The night before the surgery it was so bad I went to the ER and embarrassed to be telling them about it but I was scared I wouldn’t be getting the vaginal

    Hysterectomy the next day. But the ER said when I got through the surgery the yeast infection would be gone because the scrub you up with betadine.  I was skeptical but the infection was gone when I woke up anesthesia. So my gynecologist told me about the washing with it or using the dog he and now they even have the disposable douches with betadine in it. 

    • Joannwilson
      Joannwilson

      Posted

      Where it says using the dog he, should say using the douche. Spell check makes some funny sentences. Lol. 
    • Guest
      Guest Joannwilson

      Posted

      Hello Joann and thank you for your reply!

      Love that you took time to explain it all, I do HOPE I do NOT have severe yeast infection...

      Im gonna look deeper into it

      Best regards 

      ninni

  • Guest
    Guest

    Posted

    Hello there ladies & gentlemen,

    It's been a while, I'm taking lots of notes of appreciate everything you guys have written.

    I finally got a date for doctor appointment, September 12th, im gonna go to the doctor (another doctor again)

    to try to get a referral so I can meet the Skin specialist doctors.

    I also want to add, one of the previous doctor I met; they told me I had severe low Vitamin D levels.

    He gave me Vitamin D3 capsules to take 800 IU a day. To me it sounded very low.

    I was reading on different sites on the webb that some people take 10-15,000 IU vitamin D / per day for a certain amount of time.

    Doctor prescribed me Vitamin D3, is it SAFE for me to take 10,000 - 15,000 IU - Vitamin D3 / per day?

    Also, this doctor was very young, he looked he was in his mid 20's. I have a feeling he isn't that experienced either. I dont only think im very low on vitamin D, but all other basic vitamins too.

    AND - I have a questions for you guy, most of you have seen my situation down there. I basically have scratched away my own skin surface. Lost skin pigmentation so it's plain WHITE and red/pinkish around my genital area.  

    Does ANYONE know if it's possible to ever get rid of the white/red/pink pigmentation? With other words, can my skin ever GROW BACK? 

    Also, I feel like anyone who doesn't have Lichen Sclerosus will never understand the pain. 

    Not only do I have the severe version of it, besides that I've lost my own skin pigmentation, 

    thanks to it, I've lost all my confidence, I feel awfull mentally, physically - emotionally.

    I'm 22 y/o but I feel like im 60 inside of my body.

    I've lost the hunger to be happy, to have goals in life. My itch hurts 24/7, I go to bed with pain in my body, feels like pain in my bones, I wake up feeling I've been beaten up even though i havent done anything. 

    I can barely urine right, I can't hold my own pee. I can't sleep. I feel im not capable of anything.

    Im a sensitive person over all, I also am a thinker, I tend to think a lot about stuff, past, what if, etc.

    When I was working, It felt like my condition broke out even faster. I can't handle stress. I just break down into pieces. There's no way to desribe me than stressed, depressed and full of anxiety.

    I quitted job last year  September 2017. The good thing is I didnt stress as much = my condition didnt break out as much when I work. Bad thing was; no income.

    So in January 2018 i decided to study, now i've been studied for 8 months, and im getting even more stressed again with all the exams.

    Wheter its work or studies .- I can't handle it. 

    No one arounds me understand and its lonely and frustrating. 

    I wanted to ask you guys, am I overreacting for not being able to work or study? 

    When I tell you I can't i just cant. I can't even wear panties, jeans. I always need to be near bathroom or have potty wherever i go.

    What I can do is I can turn to my insurance company, I do can get a montly allowance if the insurance company think my disease/condition is sever / worthy to support.

    What they will do is they will contact my doctor and get acces do my health journal.

    I think it's worth giving a shot, but then again I feel like they gonna laugh at me. That i should just try get my s**t together and work.

    But I can't function as a normal human being,

    Also what do i say? Both to doctor and insurance company?  How do I convince them? After all, I've had this conditon for minimum 7 years, I'm gonna sure they will questioning me why not going to doctor sooner.

    but its very simple, I was just in the bottom of my depression and I had no one to turn to. So all i could do was try to substain the condition/disease - and now I can not.

    Thanks for any answer!

    best regards

    Ninni

  • jane08222
    jane08222 Guest

    Posted

    Sometimes it really does feel like LS is too overwhelming. And it is lonely.....only those with it can relate to it....many times we feel like we know more than the Drs.......the key is to figure out what works to get it under control and then deal with flair ups as they come.......a few musts.....100% cotton undies, a bottle that squirtswater to cleanse with after you pee, figure out what oils work to prevent fusing, diet changes as needed...for meit is gluten free, not much sugar, a vitamin D3 supplement, as well as vitamin B complex....

    I found Emuaid Max to be very helpful, as well as pure coconut oil, and aloe vera....I rotate those during the day, and nights I am notusing Clob (2 x a week) It as been 10 months since diagnosis and it took 6 months to get it controlled, so dont feel like you cant...YOU CAN!

    There were days I couldnt even wear undies, so just wore moomoos around the house which worked great....didnt wear pj pants either...switched to nightgowns only.

    THE KEY is to figure out what works for YOU, know that flares will happen....and try to smile, and set goals to make you happy!

    • Guest
      Guest jane08222

      Posted

      Hi Jane,

      LS is more than a handful, and I've so much to learn..

      in my case, as severe it is, im worried I'll never be able to become 'normal' down there ever again..

      best regards

      ninni

  • Nancy_K_B
    Nancy_K_B Guest

    Posted

    HI Ninni dearheart,

    So sorry it's taking you so long to get a doctors appt. but glad it' coming. So, were you able to get an over the counter non-prescription of Diflucan or Monitstat? how do you feel now? 

    YES! you can take a whole lot more Vitamin D3! YES get that 15,000 going asap. 

    The Vitamin D3 will not only help with your physical issues it will also help with depression.  IF you can afford it - you must really - be sure to also get Vitamin K2, MAGNESIUM, ZINC, Vitamin A in the ratios I found online to be best for us. Most of these ALSO happen to be indicated for DEPRESSION.  ( Hey everyone... isn't this amazing... the same combination of supplements that have proven efficacy for autoimmune is ALSO helpful for depression? - makes one wonder which came first). 

    Dear Ninni, When you get to your Doctors appointment Be SURE you also ask for a referral for a psychologist or someone who works in mental health (hopefully who knows a dang about nutrition).  I am very concerned for you dearheart. May I ask gently please, have you been sexually abused or raped by a family member or sports coach or someone in the past?   I ask, because I know several women who were too shy/etc when they were young to tell anybody.  It might take years to over come that and the courage to move forward. You need a caring person in your life NOW. We can only do so much from half way around the world. 

    I had one very traumatic experience years ago with helping a neighbors child who begged me to take her home with us after I had moved 6 hours away and was just visiting. I couldn't believe it. I hadn't realized how badly her mother was treating her. ( I found out later that the mother had something called "borderline personality disorder". )  The child when I got her home with my daughter smelled and stank to high heaven and was itching her crotch all day long. She was very bright and I know it must have embarrassed her.  I got that taken care of at the doctors, but it took the next three months to get her to not flinch at the thought of a man???? it turned out that her mother's boyfriend had just "played" with her and showed off his man parts. I think it took years of therapy, living with her estranged father family to get well. 

    So, if any of my intuition is right, please find a support group Ninni, and we here will continue to work with you and hold you in our hearts.  Many blessings, Nancy  

     

    • Guest
      Guest Nancy_K_B

      Posted

      Hello Nancy and thank you once again for taking your time writing this submission.

      I really do appreciate it so much..

      So, were you able to get an over the counter non-prescription of Diflucan or Monitstat? how do you feel now? : I've not yet gotten my hands on Diflucan or Monitstat. You see I am in a tight situation. I've been working until last year september 2017. Then I quitted my job cause of my disease/condition and i stopped function like a normal human being. With that said, I havent had a stable salary, AND with those money I've had from working and saving, I've helped my parents paying their loans/debts/bills every month until now.

      My dad's only one working and my mom is sick so i am the one taking care of her. And ofcourse, my parents do not know about my conditon.

      I am basically broke and I can rarely afford my own medical bill. I've sadly asked my brother for money each time I'd to go to the doctor. And it's something Im not proud of.

      I wish I just took care of myself to begin with, but after all, the main reason I'm in this conditon was cause of what have happend in the past. 

      I've started to take Vitamin D3 15,000/day. And phew, I didn't die! On the bottle description it says ' contact doctor if you consume over 5 tablets ' and here I am taking 19 tablets in total to reach 15,000 IU. 

      I wish I could buy all the things I need right now but I can barely afford my own tampoons right now.

      I spent so much money help others and ignored helping myself first.

      I've been to psychologist in a few years ago. I went as a teenage (when it was free) but becoming an adult it costs money and ofcourse - i can not afford. If I remember right I need to go a X certain times to get some sort of ' free card' but you need to go atleast 10 times to psychologist, it cost around 28 euro last time I checked for 1 meeting with psychologist. 28euro X 10 times.. ugh

      it's hard when I dont work and worst part is - I can't work. My condition is driving me insane, keeping my up day to night. Painful, itching, you know the drill. 

      And, it's kinda interesting that you asked. So here comes the less fun part of my life.

      When I was 4 years old, me, my big brother who's 2 yrs older than me - we went over to his friends house to play. His friend lived right acrossed to our house. I remember, our friend, who was a boy, took off my panties and performed oral sex on me. 

      My brother wasn't near by when it happend, but when it was over, I ran straight home and told my parents. 

      I slightly remember I was taken to a hospital, and i had to show a doctor what happend. The way I showed it was using 2 dolls to explain it, since I was so little.

      We never played with that boy again, one downfall was we went to same school for 8 years. Not that great.

      Around age 5/6 I used to play with my girlfriend who lived on same street as me too. Her older brother always used to come and join us whenever we were playing in her room or whenever her parents wasnt around. I remember something was very 'off' with her older brother, he used to grope me on my private parts and later on I told my parents what was going on, and so i was never allowed to go over to my friends house again. 

      A random fact, the first boy who performed oral sex on me, and the other boy who's brother to my girlfriend. They both were best friends.

      During age 7-12, I actually felt I wasnt affected of what had happend to me when I was younger. I didn't think about it. I was always healthy, happy, into sports etc.

      When I was 13 I was going to play with one of my best friends at his house, we'd known each other for years. When I went over to his home, I instantly noticed his parents wasnt home, and they always were usually. We were going to play computer games together like usual, but that day turned out into something different.

      It was 1 day before christmas, December 23'rd. I noticed my best friend started to grope on my private area. I told him to stop and that I didnt want to. I wanted to leave, and as i was going to leave he pushed me back to his bed and told me to be relaxed. (take notice my best friend was 15, 2 yrs older than me).

      I remember being scared, and panicked but I couldn't move. So he pushed med down in the bed, took off my pants & panties. I remember telling him NO. My mom taught me, 'No' is a full sentence. No means no.

      He didn't listened. He held me down as he performed oral sex on me,  he then forced me to perform oral sex on him and I remember crying when it happend.

      He put me on my back, and he lied ontop of me, and I could tell this is the moment he's going to rape me. IF I do not react or do something now Im going to regret it for the rest of my life. As it felt I was being in coma, or my body was - since it wasnt moving. I told my self to snap out of it, So I took all the strength I had and pushed him off me. I took my clothes and ran out in the cold and took first bus home.

      And I never talked about this with my parents, I blamed myself for it. And I never  told any other adult, no police, no teacher. I was scared it was going to be blamed on me. And I was scared my then friend would've recorded it all. 

      My life continued, and I tried to stay positive but it was hard when you're surronded by toxic people.

      My best girlfriends that I'd known for life all the studden turned their back on me. Straight up bullies. When I was younger I was too young to understand what it was about. But now when i'm older I can tell it was jealousy. I'd no friends through high school, and girls liked to talk behind my back, calling me whore, slut etc.

      One of my childhood friends, whom I've known since kindergarden. 

      I was 15, and I was at school, I went to a bathroom that's located a bit far away from the center of the school. When i came out from bathroom, my guy friend surprised me outside and pushed me straight into the bathroom again. 

      I questioned him what he was doing, and he forced himself upon me. He groped both my breasts and private part and I started to push him telling him I dont want to, as I tried to leave the bathroom he pushed his whole body close to mine from behind, and he held me with a steady grip.

      He tried to pull down my pants, and i could hear him unzipping his pants. I fighted for my life, and swore to myself it's not going to happen again, I fought him and succeeded to leave bathroom without being raped,

      but I was still traumatized. 

      One of my close friends did that to me. Same from when I was 13. That guy was also a close friend. 

      How can someone be so cruel and break the trust like that? When I trusted them with my whole heart and they took it as an advantage.

      I'd to switch school here and there cause of how mean girls were towards me, and how disgusting guys could be.

      I was a happy & healthy girl but from the day my own best girlfriends turned on me and tortured me.

      From the day my guy friends decided to take advantage of me, things were never the same.

      I believe I got Lichen Sclerosus cause of what happend. 

      The things that happend to me, made me highly depressed, stressed, I got traumatized.

      And so I've been depressed for 8 years now. And the stress is still there,

      The pain is still there, the resentment is still there, I feel so deceived.

      What's unfair is, all these people that hurted me, they have all continued with their lifes, 

      I was in such bad psychological state I decided not to go to collage/university. I did get it, but could I make it? No.  

      Im resentment on life, of what happend, that no of the people had to face any consequences. They all continued living their life, making career, buying their own apartment, starting family, having their own car.

      And here I am, still living in the past, traumatized by the past. Living with my parents, trying to take care of my mom.

      My whole situation has stressed out my parents too, allthough they dont know even half of what have happend to me. But if im stressed, depressed so is my parents. And it goes the other way, when my parents are stressed and depressed, i feed of that energy and it all becomes  a huge mess...

      This was really a indepth conversation, not sure if i should''ve shared it or not. But I havent done it with anyone else so far.

      At age 13-21 I remember I hated men, I despised men. Cause of what other guys did to me, I thought that's how every other guy is. What's really sad to think about is, I was relly resentment and bitter towards my own dad and brother - without any reason. They have always been loving and caring towards me. 

      I just couldnt stand them cause they were men. Cause all i could think about Is that the other guys did to me. But, I've jumped off ' hate all men ' train and realised not all men are like that. But yeah, i can relate.

      I couldn't be alone with a guy, look at a guy or talk to a guy without feeling upset, betrayed. It's.. deep.

      But to get it out there, I never hated my dad or brother. it's hard to explain. I love them, never stopped loved them. We had a tough time. Or I had, a tough time, to get over the fact they're not the ones hurting me. 

      Noow, this turned into  a really big deep topic. But yes, you're intuition was right.

      Should I've shared this or not I dont know. 

      But now you atleast know how I got into this condition.

      Looking at my LS each day, is a reminder of everything that happend in the past and it sure does hurt still.

      Hugs

      Ninni

  • PrincessT
    PrincessT Guest

    Posted

    i know how you feel i have been suffering for about 8 years there are times i can barely walk from being so hurt down there raw ,itchy , bleeding skin pleeing off and your right it seems like night time I itchy the worst to where I dont sleep well and no one understands what you are going thru . I am 63 years old and I don't have a life . I cry sometimes when I have to go to the bathroom. I feel like I don't want to live this way but I wouldn't do that to my family .I see a new doctor on the 16th of January a Urologist gencologist i hope they can help because my Gynecologist said they had more training than she has. My gynecologist gave me A stroid cream which helps a little i have had a biopsy done i have lots of scarring to where my vagina is closing i couldn't even had a exam because of it. I can't hold my bladder so I have to wear a big ol pad all the time .I have gained some much weight. I have such a rash on my butt. There is no cure for lichen sclerosis but hopefully we can get it under control. I haven't had sex in 12 years and I say if I wasn't already divorced I would be by now because sex is out of the question .I feel like I can barely wash my vagina it swells up to where I am sitting on it and we all know you don't normally feel your vagina. Someone needs to understand the pain and mental stress that comes with Lichen sclerosis is unbearable. I have seen at least 8 to 10 different doctors over this . I will let you know what I find out Tuesday I can't go on this way .

  • vidua
    vidua Guest

    Posted

    hi, so sorry you are going through this. i was diagnosed couple years ago and was prescribed steroid cream which made things worse. I got into researching all about this condition and looking at biopsy cross sections, it was noted that the condition is inflammation of the tissue. So started to use anti inflammatory creams containing zinc oxide. To my surprise the white skin gradually turned to pink and itching stopped. Only a very small region is still white but its manageable. Now I use olive oil every time after using the loo. Olive oil has anti inflammatory properties it definitely relieves irritation. hope this helps xx

Back to top
Prev

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.