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Types of LS

Posted , 6 users are following.

samantha1970
samantha1970

Hi,

I've read on these boards there are different types of LS. Some people say four types. Could someone please explain the different types or let me know where I can find this information?

Many thanks

1 like, 18 replies

18 Replies

  • lisa89255
    lisa89255 samantha1970

    Posted

    Hi Samantha, there is vulvar, penile, and other locations such as trunk, and legs - a friend of mine has it on her arm. I think the 4th may be oral but I am not sure. There is an interesting article on medscape but usually online info primarily discusses the three I mentioned above. From what I understand, LS doesn't necessarily stay confined to one area for all people.
    • samantha1970
      samantha1970 lisa89255

      Posted

      Thanks Lisa,

      The impression I had was more to do with different types of aggression with the vulva part. So for example some people get it mild with minimum symptoms whilst hers seem to have very aggressive disease which doesn't respond well to standard treatment.

    • lisa89255
      lisa89255 samantha1970

      Posted

      That's terrible. I've read it can be more aggressive for some people. There are things she can do to help get some relief. I've read lots of good advice on this forum. Something I noticed yesterday when I posted my first question is that there are a lot of other sufferers willing to share their insights and just one suggestion can give you a new perspective on how to cope with a specific issue (see the responses to my LS and UTIs question). Lee simply said that urine burns the skin and it changed my thought process completely. I thought I had to go pee everytime I had the urge, but after reading that I decided to go less frequently. Now tomight, my symptoms which seemed so bleak to me yesterday have almost completely disappeared. You should encourage your friend to participate in this forum she may find it very helpful.
    • lee12629
      lee12629 lisa89255

      Posted

      Glad i said somthing that might have helped.Yes i think these forums alot of times help more then doctors.
    • samantha1970
      samantha1970 lisa89255

      Posted

      Yes these forums are fantastic. I've learnt more here than from any doctor 😊.

      90% of the time I do a baking soda wipe after I use the toilet, it does help. Also witch hazel helps.

  • lee12629
    lee12629 samantha1970

    Posted

    Wow i never knew that.I suppose the computer is your best bet in finding info on that.
  • gill59695
    gill59695 samantha1970

    Posted

    I have vin 3 which is the most aggressive type, I think vin1 is the milder more treatable type and can go away with creams. I was told that even with vin 3 when it is removed it can return as vin 1.  Not sure if this is true but it is reassuring to know. The forums have really helped though. As a diabetic I don't eat sugar but the other day had something I thought was sugar free but was not, the next day the itching was awful so stay off the sugar!
    • samantha1970
      samantha1970 gill59695

      Posted

      Thanks Gill, that's very interesting. I do find sugar can give me an itch the next day, dairy too. Do you use the same treatment with VIN3 as with ViIN1? Were you diagnosed with VIN or LS first?

      Thanks

       

  • gill59695
    gill59695 samantha1970

    Posted

    Everything happened at the same time. I was having symptoms, itchy and sore for a couple of years assumed it was menopause. When I went to the clinic, they diagnosed LS and said it was advanced.  The biopsy was vin 3. The treatment I have had has need surgery and laser.  My surgeon has not offered any other treatments. I am using the coconut oil, bicarb and hydrocortisone  ointment. These were recommended via the forum.
    • samantha1970
      samantha1970 gill59695

      Posted

      Thanks Gill, how are you now after the treatment? Yes this forum has some great ideas 😊
  • gill59695
    gill59695 samantha1970

    Posted

    My last surgery was 2nd Nov and I'm feeling ok, it took about 3 weeks before I was able to feel comfortable.  I am still waiting for the results of the last biopsy hopefully it will not be anything more than vin 3.
  • pat48434
    pat48434 samantha1970

    Posted

    Hi Samantha,

    I have heard of three types of LS being one.  I also have Lichen Planus which occurs in the mouth, and the skin.

    Lichen Planus can be on the gums, inside ofand gets to the point that you are afraid to eat anything but liquids walls of mouth and tongue.  It is very painful.  A dental specialist took a biopsy and it was confirmed.  I use a steroid cream when it flairs up.  I lost my husband of 58 years two months ago and the LS and LP really flared up, just now they are under control again.  Now I found out I have a skin cancer, pre cancer and since I was in te dermatologist's office another spot started.  Don't know what that is yet, hope it is'nt Lichen skin problem. 

    • samantha1970
      samantha1970 pat48434

      Posted

      Pat, I feel for you. 

      I think I also had a bit of undiagnosed LP. A year ago I suffered a lot with an itchy scalp and also tounge problems. I never did discuss them at the time with a doctor. What I did do was reduce my dairy intake drastically (I did eat a lot of dairy with daily breakfast yoghurt and cheese in a main meal). Since cutting back about 90% of this I have not had the same symptoms. In know my vulva itch reacts when I have dairy the next day too.

      im sorry to hear about the skin cancer, it sounds like you keep a close eye on your skin which is a very good thing. What type have you been diagnosed with? 

  • Morrell1951
    Morrell1951 samantha1970

    Posted

    Samantha, in Dr. Goldstein's presentation he mentions fout types of LS. From the women we've had come to this forum in my 2 years or so, he's right. I'm a lifer who had it at age 22 if not earlier and now I'm 64 and only had to give up sex recently. Th at the other extreme we've had teenagers with major disfigurement coming on in a period of months. So, it seem it's not so much 'types' as levels of aggressiveness. It's what makes it tricky if we assume we know what someone else is going through.
    • samantha1970
      samantha1970 Morrell1951

      Posted

      Morrell, yes it's the aggressiveness levels that I'm trying to understand. For me I don't know or can't tell how aggressive mine is and that's what I'm trying to work out. I know I can't go more than 3 days without using some form of steroid, but I can say since I had the laser and PRP a couple of weeks ago my discomfort is better than before. The white patches seem to come after 3 or so days hence the steroid. 

      My next laser session is mid Jan so will see how things are in between.

      thanks

    • sue19838
      sue19838 samantha1970

      Posted

      Hi Samantha1970

      I was just diagnosed about a month ago and also do not know how aggressive or what stage I am at.  I have only been useing .50% Cortisone but the itch got really bad this weekend so doctor gave me 2.5%.  What is PRP?  Is the laser like the one you would get on your face.  Did a dermatologist do it?  Not sure they would do that here in Canada.

    • samantha1970
      samantha1970 sue19838

      Posted

      Hi Sue,

      I would recommend you ask for a referral to a vulva clinic. You can see a dermatologist or gynaecologist there who specialise in LS. This way you can get a confirmed diagnosis. The cream of choice for most is Dermovate which is the strongest steroid available.

      The laser is also known as Mona Lisa Touch to some and yes similar to the face. PRP is platelet replacement plasma which also helps with rejuvenating the skin.

      Take care, Samantha

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