lichen or vitiligo

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I'm a 35 yr old male. Six months ago started getting white spots and lines connecting them on my penis head. First dermatologist said it was nothing...He gave me protopic and it hasn't helped...went back again he said its nothing...I got a second opinion seeing that it is spreading...He said I have vitiligo...He used a wood's lamp to look at it...I'm concerned that it may be LS and not vitiligo but right now there are no sores and it doesn't burn or itch...If it's LS I would like to know and treat it early...I have multiple autoimmune problems...thyroid, sjogrens, interstitial cystitis...Anybody have any advice as to what I should do?

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  • Posted

    Hi Jared, 

    I'm Nancy, age 72 and only recently diagnosed a couple months ago - - - It became apparent that I'd had it for some time. I've also read here that lots of people experienced the same awful years of not getting diagnosed correctly and then realized that they could have done something so much sooner. 

     

    So here is what I"ve researched an discovered about autoimmune diseases in general - which includes not only the LS but also thyroid, vitiligo, sjogren's,  and about 150 others.  Vitamin D deficiency is now recognized as a worldwide pandemic along with autoimmune diseases. Leaky gut syndrome is also associated with most all of these. 

    So my suggestion would be a major overhaul of your lifestyle to include a leaky gut diet protocols (and read up on autoimmune diet protocols and anti-inflammatory also just in case) and no sugar, and Vitamin D3 at 5,000iu with K2, magnesium, omega-3's  as baseline preventatives.  DON"T Wait to confirm any tests. Take your own intuition to heart. 

    Here are two articles I wrote up for us all here recently: 

    Maintenance/Recovery Premise from Lichen Sclerosus

    https://patient.info/forums/discuss/maintenance-recovery-premise-from-lichen-sclerosus-635047

    Nutritional Support Protocol for Autoimmune Diseases

     https://patient.info/forums/discuss/nutritional-support-protocol-for-autoimmune-diseases-636963

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    • Posted

      Nancy KB

      I know  you have been busy with writing Nutritional Protocol  for Autoimmune Diseases information.

       I too over the years have pulled information from variety of sources on line quite a few from the US.  Together with my own experiences managing LS for nearly 17 years. 

      I hesitate to advise people in general to start taking supplements, unless they have evidence it is what they need. 

      People with autoimmune diseases may have digestive disorders too, so unless working with a professional, ie your doctor, it doesn’t matter what supplements you take for LS,  if your body can’t readily absorb them. 

      Your digestion is a very sensitive part of your anatomy and needs to be prepared.  

      LS Nancy as you know has a life of its own and is very personal to each individual. 

      One size does not fit all especially for LS. Though I already take three of the supplements ‘you’ outlined from ‘your’ research  it actually took me quite a while, one tablet at a time actually to see if it/they made a difference. 

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    • Posted

      Sedg - THANKS so much for the reminder about people having different digestion systems. 

       ABSOLUTELY everyone should work with their health providers.  Perhaps I should do an updated version at some point.

      I do hope that everyone realizes that I was simply identifying every supplement that had research behind them that aids the immune system health. 

      As I said before, people, use your own intuition as to which of the list I created will be most beneficial for you - AND take it to your heal care provider. 

      Sedg, I personlly hesitate to use the word doctor or physician, precisely because in the U.S. anyway, most doctors aren't trained in nutrition and even on this forum many women have mentioned that they got their help from naturopaths, chiropractors etc. 

      but indeed, Sedg, THANK you for reminding me to include your caveats in coments.

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    • Posted

      You are so right re doctors n nutritionNancy.

      I should have put health practitioners  😉

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  • Posted

    Hi Jared 

    LS is a sneaky ugly 👹 condition that has rules and a life of its own. 

    I can see you have several autoimmune conditions and I can relate to that. 

    My advice would be to go to your local clinic for Sexual diseases for a complete consultation with specialist.  This is the quickest and direct way to both put you mind at rest and or get a treatment plan in place. Either way you will know what you are dealing with. 

    These clinics generally have specialists in attendance for LS 

    and are very comforting  

    I am so sorry that you have had to come on this forum, but remember Jared even though it mainly women you are amongst friends and will get brilliant support from all the Ladies 

    X

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    • Posted

      any local clinic around here would be a health dept and where I live they are not good places...plus ls nor vitiligo are sexual diseases so I don't know how that relates?... the dermatologist I went to is pretty well rated and did his residency at the mayo clinic... I'm just concerned because I read both diseases can look very similar at the beginning and the only way to tell is biopsy but he didn't even mention that and I don't know if having a biopsy would show results at this point, or maybe even start a sore where there isn't one. 

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    • Posted

      Hello Jared

      I know of several people who were properly diagnosed at sexual health clinics. They know what they are looking at, and have a knowledge of alternative diagnoses from changes in genital appearance. It's not all about STDs, you will have experts on all sorts of conditions. It might be worth a visit. Also they might be better places than you think, often the really dedicated people go to the places where the need is greatest, and the laziest to where the pay and conditions are easy... Good luck, and I hope you get the support you need.

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    • Posted

      Morning Jared

      I do understand that LS and vitiligo are not STDs   However, my initial thought was going to a clinic for STD is a way you can shortcut the wait and diagnosis of your concern.  

      A lot of women have had to take this step due to ill informed GPs and bouncing from dermatologist and back again !! 

      Sadly,  if your local clinic is not comfortable for you then perhaps find a LS specialist in your area and armed with their name go to GP and insist on referral as soon as possible. 

      In the meantime after many years managing this dastardly 👹condition I and many wonderful women on this site have reached the conclusion that diet can help.    

      By which I mean try to eat less sugar, dairy and processed foods. These are all heat producing foods that LS thrives on  🙁

      Drink room temp water 💦 

      Again Jared hope this helps 

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    • Posted

      would you or anyone help me figure out how to try this diet? I'm too overwhelmed with being sick all the time to think about all this...I'm not interested in supplements at this point...But if someone could just show me what one day of eating 2000 to 2500 calories would look like while removing these things I would be grateful...By this I mean being super specific like a list for breakfast lunch and dinner.... I don't even care if I have to eat the same thing every day for a month to try it...But take in my I don't know how to cook well...I'm very poor so can't afford all organic stuff and the only things I hate are eggs and cheese...Everything is just too overwhelming for me to figure this out on my own and I've never found a person I can afford to talk to help me with this.

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    • Posted

      Jared, 

      for you to create a Menu plan that solves LS, I realized that you also need to combine any LS list of food items against any avoidance lists for both Interstitial cystitis menu and thyroid. 

      I noticed that solving for cystitis requires noting what your own trigger foods are. Have you already built yourself a list of no-no's on that account? 

      From the Instertitial Cysititis Association: 

      "Diet modification is the first line of defense for patients struggling with interstitial cystitis or painful bladder syndrome (IC/PBS). Since sensitivity to various foods can vary among individuals, it is important to determine your personal trigger foods.Sep 18, 2009"

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    • Posted

      I don't worry much about thyroid diet because my meds take away all my symptoms...sjogrens sucks but it is usually pretty mild...my IC also usually is pretty mild....I'm mostly worried about these white spots obviously because of where they are...However when they popped up or intensify I all of the sudden had a new IC symptom which was sharp pain or itchy feeling in the end of my urethra...No bacteria as usually...So that inflammation must have started these skin changes...For IC I just stay away from acidic stuff mostly....I'm willing to try and remove dairy, gluten, and bad sugar if you all will think that will help...But I need help...I don't know how to cook and I need the simplest and cheapest ideas for each meal of the day..All of this is so overwhelming...I also have to make sure I eat enough calories because I'm tall and thin and I lose weight way to easy even with an underactive thyroid

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    • Posted

      Morning Jared 😊

      No time for me to compile food lists/ menu but will this afternoon. 

      In meantime can you ask Nancy KB her recipe for Bone Broth economical easy  and very good for you 😋

      Ps I want it too 😉 as oxtail getting very pricey 

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    • Posted

       Nancy KB 

      Can you please let Jared and I have your recipe for Bone Broth 😋 sounded delicious when you wrote you were making it, but I forgot to ask then.  

      I am compiling list of sympathetic foods that are good and economical for Jared with his conditions in mind   

      Any ideas welcome Jared said 

      🤗X

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    • Posted

      Gosh, Sedg, sorry iv'e been really swamped today.  But you know I saw our note earlier and I'm trying to remember - are you sure it was me who wrote about bone broth?

      OH, oh! I remember I was visualizing making it from scratch years ago with mom. Oh, I made it with store bought, organic bone broth. It is really easy - HA!  

      Sedg, I was so hot to trot to get into the groove of non-inflammatory recipes... and I've mixed and matched recipes for years, so I"m not quite sure what i put in that last supper.. but I do know it included coursely chopped KALE added to a hot broth at the end... Oh yes, and I GARLIC, which I've always loved ( always doubled any amount in a recipe), I decided to make essentially a GARLIC KALE SOUP. I think I put a whole coursely chopped BULB of garlic in the 32 ounce bone broth. Did I also do a half ONION? I'm guessing I did, because I had recently read that onion has almost the same amount of the healing chemistry that garlic does.  ANYthing else that suits your fancy any particular day/night.   Salt pepper naturally.... 

      IF it doesn't feel full enough or there is enough for seconds next day, and IF your body can handle a bit of RAW Cheese, I grated some on top - truly yum. 

      I LOVE clear broths though, so some people may think that is too "light". It's the Warmth that you can feel that warms us from the inside that makes it so wonderful to me.  Cheers, Be well. 

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  • Posted

    Afternoon Jared

    2 weeks ago I went to a sexual health clinic in the UK and the nurse asked me to return the next day to see the doctor. On returning I was diagnosed straight away and the clinic has referred me to a specialist. My appointment has come through already and I see them on 13th March, where they will do my biopsy’s. The staff were fantastic and the service is free. When I went I just kept saying to myself, I’m sure that they have seen a lot worse and I’m glad I went.

    Good luck in resolving this ??

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    • Posted

      Well done 101  your note sends a great message out to people who are undiagnosed and suffering 🌟

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    • Posted

      I don't know what you guys mean by sexual health clinic...we don't have those in Tennessee...we have health departments and they are horrible places to go...so I'm not sure what to do

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    • Posted

      Hi Jared,  

      This forum that we americans have found, is actually based in the United Kingdom and many if not most of the people we communicate with are from over there.  Since Britain has universal health care that we sadly don't (yet) they must have quite a bit of helpful services that don't exist here.

      From reading here the lat 2 months, and taking the time to read everything in sight, it appears to me, Jared, that even if we get diagnosed, after that we are all mostly on our own.  I haven't heard of one person mention that their doc gave them any instructions about this other than to use steroids for the pain.. no suggestions for how to put it into remission. 

      That is why I highly suggest that you include the baseline that i discovered for treating ANY autoimmune ) or most I should say. That is VITAMIN D3.  It is very inexpensive. My own doctor told me to get the cheapest I could find - it would do the job.   Stop this thing in its tracks, no matter what the diagnosis is. I mentioned that I had found lists that showed that Vitiligo and LS are BOTh autoimmune so the Vitamin D will help BOTh diseases.   

      I have learned that there is a special Ls clinic here in Asheville, NC.. but of course it is expensive and not covered by insurance I don't think... I may be mistaken, I'll check... but it makes no difference; I have learned to heal this thing with the help of everyone here. 

      YOu asked Starlight  earlier how she could tell if her food and nutrition was working.  I can tellyou that my open sores stopped hurting within 48 hours of taking Vitamin D3 - this was before I learned about the food diets. 

      Then I ran out a couple weeks ago. and waited to buy it again.. oh my gosh! I only lasted 2 weeks before it came back. NOW i have the Vitamin D back and have taken it 3 days... all GOOD again! tha tis how fast - BUT it is also a rude reminder that this LS just hides out and doesn't go away.  a VERY GOOD TEST of exactly how much my body says it NEEDS vitamin D to be healthy.

      Others here have found different ways of managing. It is only a few years apparently that the research on Vitamin D ha been available that proves it.  Take good care, 

          

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    • Posted

      ahhh now I get it that these people are in the uk....yes our healthcare sucks....it took me years to get diagnosed of all my ailments...they even took my gall bladder out years ago just to see what happened...my digestion has been horrible for years...I have digestive symptoms of celiacs but definelty don't have it....Can you take too much vitamin D? with supplements I'm always concerned with taking too much if I'm not deficient...Do your pale white areas ever go away?Do you use steroid cream?

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    • Posted

      Oh gosh Jared,  My mom had her gall baldder taken out after much pain. I don't get it though she kept right on eating her avorite fatty bacon for the res of her life. 

      Anyway, about the D, will you please click on my name and slide down and on the lest you will see the two discussions that I have posted after much research. These or other replies with folks will let you know not to worry about too much D until you've taken a lot... then get your blodd levels tested - anybody with as many autoimmune situtaions is very low in D.   

      Others iwll have more info on the white areas. For me, the white receeds when I hav the D and then it ws depressing ot see it coming back, now I got a new supply of D and it is receeding again. 

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