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Doctor experiences

Posted , 19 users are following.

Guppy007
Guppy007

I was diagnosed around April this year.  Looking back I can see I made some errors, but I also think my Gynecologist failed to impress upon me the gravity of this auto immune condition.  Only now in October can I see the results of this...some of my labia has fused! and quite honestly I do blame myself, but I also had no idea what I was dealing with...anyway, I thought I would ask other people to share their experiences of their doctor and their treatment....

3 likes, 131 replies

131 Replies

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  • dee33781
    dee33781 Guppy007

    Posted

    Use Manuka Honey - the strongest one you can get - rub on a pea size amount every night.  Cleared up my LS two years ago - still use it, still clear.
    • Guppy007
      Guppy007 dee33781

      Posted

      Dee...Sorry Dee I nearly missed your post...Honey!  If that works for you, then thats fantastic, everyone is different..I know many people believe Honey is an amazing natural resource.
    • Guest
      Guest Guppy007

      Posted

      My dog had problems with his paw where there was a lot of dead tissue.  the vet put mauka honey on it every other day and the results were amazing. He said that the bacteria in the honey eat dead tissue but encourage new tissue to grow,  I know it is really healing but you need a medical grade strength one like Activon Medical Grade Manuka Honey which is on Amazon (the one used on my dog!).  I would definitely try it if my symptoms flare up again.
  • hanny32508
    hanny32508 Guppy007

    Posted

    I had never heard of LS, and then it is hard to know what you visit the doctor for.  I started with my complaining eight to nine years ago.  Combination of factors - thinking it had something to do with age perhaps.  Vagina narrowing and intercourse becoming too painful, thinking it was perhaps due to the incision at giving birth etc.  Finding my own reasons.  Till I finally was referred to a specialist, who knew what it was and took a biopsy to know for sure.  But the LS was rapidly progressing by then and it looked that perhaps we were too late.  

    I needed a dilation procedure done.  After the procedure I cleansed with baking soda in my spray bottle and discovered that the LS became less vicious.  Now I have been doubting my eyesight but truly see that it seems as if the fusing is melting.  Also taking baking soda in my bath.  Skin disease on my feet is also retreating.  

    All this starts to shed an entirely different light on things and feel there is hope.

    • Guppy007
      Guppy007 hanny32508

      Posted

      Hanny, I appears your not the only one using baking soda with good results...

       

    • sheila49099
      sheila49099 Guppy007

      Posted

      Guppy, it was Hanny who first mentioned it and I thought that it couldn't

      be of any harm to try it.  Glad I did.  A few generations back the women

      had all sorts o cures for different things ie; peroxide, baking soda,

      poltices, mustard plasters etc.  Today we run to the doctor for more

      expensive prescriptions that often don't work.  I am not putting them down totally because I use those drugs too.  But we should look for simpler and less expensive home remedies with natural ingredients.

       

  • kate207
    kate207 Guppy007

    Posted

    re diagnosis. I had itching and soreness for about a year, GP suggested menopause and thrush and treated accordingly, Then I broke out in weeping ulcers where the skin broke down and the GP said that at last we knew what we were dealing with -  Herpes! As you can image this did wonderful things for my marriage, as herpes has to be contracted somewhere, and each blamed each other. It was only when I failed to respond to the 'herpes' treatment -six months of weeping ulcers, such fun - that i was sent off to a genito-urinary specialist who took one look and said LS. I must have been one of the few people who was pleased with my diagnosis, as at least it meantthat marriage survived and  I no longer felt contagious, and didn't have to keep isolating and boiling all my towels, washcloths etc.

     

    • Morrell1951
      Morrell1951 kate207

      Posted

      This is so interesting. I went to my cool young female GP in 1974 with a screaming sore like the one you describe, Kate, and she diagnosed Herpes Simplex II on sight. Her office was in the heart of what was soon to become the Gay Village in Toronto, so she was focused on STDs. All these years I've believed I got it from a toilet at work, since I certainly hadn't had contact with anyone but my husband and he never got cold sores. I never had another herpes outbreak down there. When I think of it, that happened before I started getting the tear in my perineum. Forty years and half a dozen gynaecologists and dermatologists later, I got a pseudocystic smegmoid abcess (we have a discussion on it – https://patient.info/forums/discuss/pseudocystic-smegma-abcess-295940) and the emergency physician diagnosed post-menopasual vulvar atrophy and sent me to my present gynaecologist who immediately diagnosed LS. Her practice has 1000 LS patients.
    • Guppy007
      Guppy007 kate207

      Posted

      That is a shocking story!..I cannot believe how your doc got it all so wrong, thank goodness it all worked out in the end.!
    • Guppy007
      Guppy007 Morrell1951

      Posted

      Morrell, that is truly terrible!  Also thinking for all those years that you had caught "it" from a toilet seat.

      Its pretty shocking you had to wait all those years before finally getting the correct diagnosis. 

    • jackie73005
      jackie73005 kate207

      Posted

      Hi Kate my gp also said i had herpes when my skin broke out in weeping ulcers, i have been married and faithful for nearly 40 years as i know my husband is too.  The test came back negative but i was distraught.  Salt in the bath every night for 2 weeks helped the symptons clear up, but emotionally i was a mess.
    • kate207
      kate207 jackie73005

      Posted

      Yeah, it reallly doesn't help having the emotional turmoil added to the physical distress. And since LS outbreaks are

      Hi Jackie, it really doesn't help, does it, when you have that unnecessary emotional turmoil added to the physical distress. My Gp was really apologetic and embarassed when I got my LS diagnosis, and explained just how little training they get  -usually part of one lecture-on LS in med school.

       

    • kate207
      kate207

      Posted

      Sorry, I have no idea what happened there. I thought I'd lost the first bit, but it reappeared when I posted!
    • Guppy007
      Guppy007 jackie73005

      Posted

      Hi Jackie, I wonder how many times this has happened to other woman and ended up breaking up marriages?  its not really good enough, and I believe some doctors are lazy, a little bit of research on their part would inform them quite quickly via their computer what the problem was.  I am not surprised you were a mess.
    • hanny32508
      hanny32508 kate207

      Posted

      Let's say -  LS sits only in the starting blocks.  If all of us will tell our doctors to talk to their other LS patients about some of the things we have figured out on this forum .... that'll make many more lives better and perhaps the tide will turn.  
    • jackie73005
      jackie73005 Guppy007

      Posted

      I have actually insisted that i be tested for other auto immune conditions because it appears if you dont ask you dont get!!!
    • Guppy007
      Guppy007 jackie73005

      Posted

      Jackie, I was not aware that you can be tested for other auto immune conditions ? When I was diagnosed this year with Ulcerative Colitis I thought the Lichen Schlerosus followed, but now after becoming more informed, I realise I have had Lichen Schlerosis for many years, but it was not aggressive, and I didnt know i had it, it only really flared badly this year.
    • Marcar
      Marcar Morrell1951

      Posted

      Hello Morrell1951,

      I live in Toronto. Could you provide the name of the MD with all those LS patients? 

      thx,

      Marcar

    • Morrell1951
      Morrell1951 Marcar

      Posted

      She's in Smith's Falls, so I don't think close enough.
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