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Diagnosed at age 21, and now I am 55 and here is what has helped me

Posted , 14 users are following.

lori64430
lori64430

 I started itching when I was a child so I believe I’ve had this all my life.  I had a biopsy at age 21 and it came back Lichen  Sclerosus.   What has helped me the most is forcing myself to NOT itch.  I would literally itch every single night and I had to figure out a way not to itch.  What I figured out was to wear jammy pants with a string and tie my pants very tight in a knot which would prevent me from itching.  They say if you can stop the itch you can stop the progression.  What I have noticed is that the itching CAUSES more itching which causes more injury and the itching is the  vicious cycle.  The white patches appear on the skin to form a callus where we have been itching.     After I stopped the itching cycle ( and you end the itching cycle by not itching ) and put on coconut oil every morning noon and night all the white patches have disappeared.  The more I do not itch it  The more it does not itch.  There was nothing in this world that felt as good as itching did but the itching is the vicious cycle that if you end the itching you will heal.    I  Have been married for 33 years and my understanding husband has been  understanding  with not having intercourse for the last 18 years.   What I have noticed lately is that the anal area is affected as well which narrows the rectum and anal fissures   are becoming a problem  when I don’t eat clean and have gotten myself constipated.  I do believe this is a genetic disease since my grandmother had it and one of my cousins has it.  My mother did not get it but her mother had it and I have it  and my mother sister’s daughter has it.  I just wanted to share what  I have noticed that  has really helped me for the last 35 years of this skin disease.   Consciously and deliberately NOT ITCHING was difficult but if you can get through the first week the itching cycle seems to dissipate and you can go longer and longer without itching and you will see the healing begin. 

4 likes, 15 replies

15 Replies

  • susan43705
    susan43705 lori64430

    Posted

    Hi Lori,

    Sounds like you have this monster under control. So great you have an understanding husband.

    What is the brand of coconut oil you use? How often do you use it? I'm using everything but coconut oil, but maybe next. 

  • brigitte_27336
    brigitte_27336 lori64430

    Posted

    Lori , I feel your experience is so much like mine. Thx for sharing... I also feel i had this forever. I was 8 when bits of eczema started . My doctor at the time 1980... just told me to stop scratching. I went on for a whole lifetime scratching until i decided myself to stop by all means..,,when I got threw my first week.... the worst was over. I stopped ( 7 years ago)and the more time passed And the itching went away. Just 5 years ago i got diagnosed but At least the not scratching helps a lot. Xx
  • brenda12750
    brenda12750 lori64430

    Posted

    I have never tried coconut oil if it works I need to get some.
  • jacqueline96242
    jacqueline96242 lori64430

    Posted

    Thanks Lori . It must have been awful for you . The doctor said mine is early stages but I think I’ve had it for years and it’s got worse , funny enough I don’t itch but have white patches and always get sore patches . My mum itches but hasn’t been diagnosed . My sister died of vulva cancer but don’t know if she had LS previously . Could be hereditary ,  I will try the coconut oil  see if it helps . I’m using clob at the moment until I see skin specialist. I have been taking pics each week to see if there’s any difference and will show the specialist. If it doesn’t work I’m going down the natural route . Everyone seems different . 
    • sarb73328
      sarb73328 jacqueline96242

      Posted

      Jacqueline - can you tell me what symptoms your sister had of vulva cancer? Do you think she was diagnosed too late to get treatment for it as I have read it is a cancer than can be removed if caught early. Cancer diagnosis must be awful. LS is frightening enough as it can be quietly progressing without us knowing it. I only had itching at the beginning, some 4 years ago, and never had white patches until recently around my anus. My diagnosis came after I had discovered fusing and even then 2 doctors dismissed it at first. It was my insistence that got me steroid prescription which luckily reversed some of the fusing. A biopsy has never been suggested in my case.

      I have said it before, but I really feel we are alone with this disease. I guess  there is little doctors can do other than prescribe steroid ointment. There appears to be no support for the psychological effects on us (and our partners) either and this disease is so depressing, especially as you feel you have no control over when it may flare and worsen. Doctors can be too casual in their manner and not very informative. when I asked my GP about other patients she had with LS and whether they managed it for long periods of time, she just said it was hard to say because they stop coming for consultations!!

      This forum has been a lifeline and all the advice re creams, supplements and diets have helped me. Thanks to everyone.

    • jacqueline96242
      jacqueline96242 sarb73328

      Posted

      Hi , Don’t worry because you only have white patches . My sister was unfortunately diagnosed too late through her own fault because she didn’t bother to go when she had lumps . Her boyfriend made her go as they got bigger . I had a very small lump as I thought and when I went to the doctors she noticed the white patches . The lump was a hair follicle. But as you can imagine I panicked because of what my sister had , she most probably had LS but didn’t know  . She was a lot younger than me and we didn’t talk about this sort of stuff . I didnt  know I had it until about a month ago  . I have been sore for a few years and had lesions which I treated with nappy cream . I’ve been to gynaecologist/oncologist. She was 100% sure I didn’t have vulva cancer but did a biopsy for my sake to reassure me . For me it was a relief . But we must keep checking for anything different down there . I take regular photos which hopefully will help me to compare. Useful when I go to skin specialist, which I have an appt with end of August. I’m trying steroid ointment first , exactly as she prescribed. If this doesn’t work I’ll try natural route . As you know on here we have lots of advice from these lovely ladies that share their experiences. What works for one doesn’t for another. I think it’s going to be trial and error for us all , Good luck and keep us posted 🍀

    • sarb73328
      sarb73328 jacqueline96242

      Posted

      Yes it certainly is trial and error for us all. I am so sorry about your sister. How many of us really examine carefully down there through our lives? It doesn't surprise me that you didn't talk about this sort of stuff - who does? That area of our bodies is rarely talked about which is half the problem. Glad to hear you had the all clear, but obviously not glad that you have LS. Good luck with the steroid, it's definitely helped me along with lots and lots of moisturizing. 

       

  • susan43705
    susan43705 lori64430

    Posted

    Hi Lori,  for some reason the remainder of my message to you was deleted, maybe by admin.  Not sure why as I was telling you about my biopsy experience.
  • ellen61061
    ellen61061 lori64430

    Posted

    Is it so amazing how much this disease F@C$ with us? We are so congnizen and resourcfil and sharing and hopeful...
  • hilary10136
    hilary10136 lori64430

    Posted

    I am 74 and have been demented with being sore in the vulva area for 5 months and have just been diagnosed with ls. Given steroid cream by gynaecologist as only treatment. No itching at all but cannot sit properly or drive my car
  • linda87994
    linda87994 lori64430

    Posted

    Hi Lori, Its a very strange disease in that we are all different. Mine startred after being taken off HRT 7 years ago. I was so dry I could hardly walk. After seeing Gynae I was put back on HRT and it totally disappeared until a year ago. The Drs wont write a prescription out any more as Im nearly 65, and its back with a vengeance. I don't itch at all, thank goodness and use only 99.9% Aloe Vera gel on white bits and replens vaginal moisturiser every 3rd night. After a month of Aloe my white patches are greatly reduced and no pain or itching. I too wondered about this LS being hereditary. My mother had Lichen Planus for years and I do remember her lying in bed a lot, but never heard any other relatives talking about LS. The only other thing I have is irritable bowel syndrome which seems to have got worse with time. Most people think LS is an autoimmune disease, so I don't understand how doctors don't identify which one we have an treat that......

    • lori64430
      lori64430 linda87994

      Posted

      Hi Linda

        I have definitely seen a connection between LS and hormones.  Throughout the years I would have very bad itching right before my period was going to start which to me indicated low estrogen.  Recently I had gone 11 months  with no cycle and then one month I felt like I was  ovulating.  I was very supple down there with the stringy mucus you get when you’re ovulating and my vulva was so supple with absolutely no itching or symptoms.  And then two weeks later I got a period.  After that cycle I went right back to being very dry and itchy so to me  hormones play a big part.  I also always remember as a little girl if I would be doing the splits my perineum would  tare.  This is a terrible condition to have to deal with but when I’m grieving about it I tell  myself  there are many people suffering worse afflictions.  I am thankful for this forum  as there is nothing more valuable than the experience of others going through the same thing and how they have remedied it.   To me this forum has way more information than any doctor because we are all actually talking to patients first hand. 

  • Holiday_girl
    Holiday_girl lori64430

    Posted

    I am 74 and was diagnosed with LS about 3 years ago . Didn’t know I had it but had been itching for about 10 years thought it was just cos I was getting old as my mother was always using Sudacrem cream. I use Clob and Hydromol cream which help but I wake in the night with itching so I keep a small bottle of cold water by the bed and when itching starts put it between my legs and the coldness stops the itching and stops me scratching. Hope this method helps someone.
  • marnie91241
    marnie91241 lori64430

    Posted

    Hi,

    I itched a lot for about a week, but went to my on and was diagnosed and prescribed a steroid cream. I was on it 2x a day for two weeks and now once a week. I have not itched since. I am so thankful.

    Marnie

  • sylvia48538
    sylvia48538 lori64430

    Posted

    Thank you 

    I have only been diagnosed a few weeks but have also been trying to ignore the itch distract my self I have been using intragel that has a slight numbing affect but I’m also using clobber and now seem to be healing 

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