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Just had this a year or so--are the changes likely permanent?

Posted , 8 users are following.

suzanne00
suzanne00

So pleased to have found your site.  I would welcome input as I'm a bit lost with this.  My symptoms clearly indicate a clinical diagnosis, but my OB-GYN's won't officially diagnose and treat without a biopsy (I'm in the USA where that seems to be standard tx, likely to avoid liability issues).  I don't want a biopsy because I have medication and lidocaine allergies, and that tissue is already thin and uncomfortable.  I have been using over the counter cortisone cream the last few weeks since my doctors think that this is what I have.  I have several autoimmune issues (e.g., Hashimoto's, Celiac, and multiple autoantibodies present, inc. anti-Smith, anti-centrome, etc.).  I am newly post-menopausal and have been on bioidentical creams, including estrogen for a few years. The greatest issue for me is sex.  About a year ago it suddenly became uncomfortable (though I was unaware that this was my likely diagnosis until recently) and initially doctors thought it was menopause.  Now, in spite of adequate estrogen, sex is uncomfortable to almost impossible due to vaginal narrowing and thin skin that tears easily.  My question is whether this will likely improve if I can move this into remission.  How could so many changes have occurred unnoticed until this year and suddenly affect me possibly permanently?  I am really worried about not being able to function in this arena which is so important in my relationship.  Have others had any similar experiences?

1 like, 108 replies

108 Replies

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  • wendy14679
    wendy14679 suzanne00

    Posted

    Hi Suzanne,

    Everyone is different.  I have not been able to have sex for a long while now, but on this forum I read about women who can control LS and lead almost normal lives.  This is not the case for me, but it may be for you.  I have a theory that it is all about what you eat and drink;  unfortunately all the things I love to eat and drink, i.e. very sweet tooth, desserts I love and the occasional glass of wine or champagne, etc.  I can live without spicy foods, but what a shame!!

    I wish you all the luck in the world, Suzanne.

    • suzanne00
      suzanne00 wendy14679

      Posted

      Thanks for the reply, Wendy.  I wish you well, too!  --Suzanne
    • marey
      marey wendy14679

      Posted

      i'm with you on the sweet tooth wendy...i have been cheating these last couple of days to see what i can get away with. had some tiramasu....yum...just the top tho...no sponge yuk!

      have you tried just quitting grains? thats what stabilised me. try it? 

  • marey
    marey suzanne00

    Posted

    hi suzanne,

    how is peter osbournes summit going? well i should look in on it!

    • suzanne00
      suzanne00 marey

      Posted

      Sorry for the late reply, Marey--been extra busy.  I've been able to catch a few of the podcasts while cooking, etc.  They've been really interesting.  Are you tuning in?  --Suzanne
    • marey
      marey suzanne00

      Posted

      well i registered...don't seem to have had notification....like usual....but listened to the lecture theatre talks he gave and had recorded....i'm less keen on him

      i'm so glad you're still here. was concerned we'd lost you. i'm sort of hanging around...psychologically....am busy as a bee with house renovations in life...waiting for the protocol to come from my friend....so i can get started...but tho i'm trying to do the right things i'm also going to have to contend with the toxins from treating cat fleas....this is major and one of the causes i believe for my illness....but what can i do?

      by the way theres a drive to get a questionaire going re LS to encourage research...any ideas/input? have a quick look.

      i am so glad you're still here by the way! thought we may have lost you.....booooo!! STAY!!....SEEN GROUNDhog day?

      love marey xxxxxxxxxxxxxxxxxx

    • suzanne00
      suzanne00 marey

      Posted

      Hi Marey--I'm definitely still here!  A little too busy!  I am feeling challenged to work, single parent, maintain a long-term relationship with a man whom I see on weekends, research all of this medical stuff, and not let stress affect my health!  There are a huge number of people in the natural/alternative field these days.  Wish that I'd known earlier about all of this stuff--especially would have wanted to have known more to help my two sons (now almost 18 and 22) not develop their own health problems (including both now having Celiac Disease). My youngest son is trying a non-processed food diet free of grains, sugar, etc. (though I have had to pay him to try it)!  Foods aren't the only thing that can lead to health problems, but they can be one very controllable factor.  More and more evidence is piling up implicating the changes to our food supply and habits that contribute to increasing functional health problems (infections and accidents were the most common problems throughout history--now it's all of these lingering chronic health problems).  I know what you mean about the flea issues.  I just had to have someone here yesterday to spray for carpenter ants--pesticides are not what I really wanted in my environment (though neither are ants)!  Not sure where the questionnaire is but will look for it in the next couple of days.  Almost 1am here so will have to sign off.  Thanks for thinking of me and I can't wait to hear how you do when you start your protocol.  Peter Osborne has interviewed a number of practitioners for his current summit and some have been informative.  Take care!  Love, Suzanne
    • marey
      marey suzanne00

      Posted

      thanks suzanne ....

      only just got this...lovely to hear from you. gosh these carpenter ants seem to be a big problem your way...and lymes...all the enviromental degradation and species loss leaving gaps for more opportunistic species.

      am so sorry to hear your sons developed chrohn s but you're on to it now...and bribing to get them on track if it works must be worthwhile. heres wishing them a recovery of good health. 

      xxxxxxxxxxxxxxxxxxxxxxxx

  • sha1271
    sha1271 suzanne00

    Posted

    I saw this discussion, so muchh to read but wanted to comment that I live near Portland Oregon and was diagnosed 10 years ago with no biopsy by a dermatologist. I noticed the white skin and changes immediately. Started on the clobetasol right away. I did lose my inner labia. Vaginal opening is still good. Seems that fusing stopped  after initial treatment. Still get irritation during period and with forplay. Only occasional tearing at vaginal opening. I use the clobetas twice weekly for maintanence. Still looking for cremes. Just using vasaline now to protect skin. Hope things work out for you. I worry about getting more autoimmune diseases, I have already developed one more skin issue and possibly ha e fibromyalgia. Starting to work on changing my diet.  Good luck to all of you women. Glad I found this site.

    • suzanne00
      suzanne00 sha1271

      Posted

      Hi!  I am in Eugene OR.  Where are you near Portland?  So glad to hear that your quick actions stopped the progression of this disorder (and that you had no biopsy, too--also my preference!).  Thanks for all the information on your LS.  Welcome to the group!  --Suzanne
    • sha1271
      sha1271 suzanne00

      Posted

      I am in Hillsboro. The first GP I saw mentioned doing a biopsy if the white skin didnt clear up. Glad I didnt go back to her. After watching Dr. Goldstein im hoping I can get it completely cleared and keep it that way. -Shari
  • kellie42169
    kellie42169 suzanne00

    Posted

    I just did my own post here to make everyone aware that there was a webinar last night for LS from a Dr Goldstein you can watch it here 

    https://patient.info/forums/discuss/dr-goldstein-lecture-271556

    • Emis_Moderator
      Emis_Moderator kellie42169

      Posted

      Hi kellie,

      I added the webinar link to your discussion and edited your post above to point to that discussion. If you want to post in other discussions about this, rather than posting the direct link use the link I put in your post above to direct users to the discussion. Doing it this way means your post(s) will not have to go for moderation.

      Regards,

      Alan

    • suzanne00
      suzanne00 kellie42169

      Posted

      Glad you posted this.  It is very good and well-worth the time.  I'm going to ask my og-gyn if she would mind taking a look at this.  --Suzanne
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