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If LS is not a virus than what is in anti-biotics that can stop a flare-up?

Posted , 8 users are following.

hanny32508
hanny32508

Recent experience with a severe flare-up that seemed unstoppable with the help of even Globetasol, was stopped by taking anti-biotics.  Do other people have a similar experience?  And does the medical world know that this is happening?

0 likes, 88 replies

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  • micheala53583
    micheala53583 hanny32508

    Posted

    I joined just to respond to this thread! I have been dealing with LS for almost three years.I was not being taken seriously by the numerous doctors I've seen in that time and am now waiting for a date to see a specialist. Over that three year period I have picked up numerous strange infections. First I got a bladder infection(not so strange), then impitego, then cellulitis, then phlebitis, which included an infected blood clot. In all cases I was treated with antibiotics, some oral and some IV. In all cases the symptoms of my LS improved significantly, in one case I felt so well I was able to make love with my husband. Very interesting that I am not the only person to have this going on.

    In the same line of thought I also experimented by taking pro-biotics and it made me fell better overall but made the itching so much worse. I often wonder though if i don't have a yeast thing going on at the same time. Oh how fun to be my own little guina pig over the last few years. I cant believe its taken this long to find out what is going on. I am devestated over this news but I am trying so hard at this point to be proactive and find support. I'm so surprised at the number of people who are dealing with this and no one is talking about it! 

    • suzanne00
      suzanne00 micheala53583

      Posted

      Hi micheala53583--Welcome and so sorry that you have had such a difficult run with strange infections!  That sounds very difficult and is indeed mysterious.  We are trying to connect the dots on this forum too and each of us has our individual experience that guides us in the decisions that we make about this disorder.  Sharing here can be validating, serve as data for theories, and can also sometimes be the source of heated debate among us!  While I am sorry that you are having to deal with LS, thank you for writing about your experience and for joining us.  There are a number of conversations about treatment options.  Have you  had a look, yet?  --Suzanne
    • hanny32508
      hanny32508 micheala53583

      Posted

      Michaela, thank you so much for sharing your experiences with LS and with anti-biotics.  It remains a mystery why it stops LS, but might be a starting point somehow for those who are able to scientifically find an explanation as to why this happens.

      And ... indeed, more openess is needed in order to give more people some form of support; no doubt there are many who suffer in silence and isolation at present.  

    • Morrell1951
      Morrell1951 micheala53583

      Posted

      Hi Michaela, glad you joined and from such a well-informed (unfortunately) angle! My suspicion is that antibiotics temporarily supress the inappropriate immune response of LS, but I'm afraid too much antibiotics might come back to bite us another way. I do hear your relief, though – what a gift to have that much of a remission.

      There's another thread on here about yeast. I do believe there's a circular relationship between LS and yeast. The LS 'bad skin' is fertile ground for yeast if there's just that extra bit of friction and/or sugar and/or stress. Looking back 40 years I sometimes wonder if a series of yeast infections (fed by all of the above) might have kicked off the LS tear in my perineum which has been chronic ever since.

    • Morrell1951
      Morrell1951 suzanne00

      Posted

      Suzanne, it looks like yesterday's post in answer to my requst for recent mainstream science on leaky gut has fallen into auto-moderation hell. Please PM me? Thanks.
  • micheala53583
    micheala53583 hanny32508

    Posted

    Thanks for your responses ladies I will say, just for specificity and full disclosure( in the hopes it helps someone else) that the relief was short lived after each treatment with antibiotics. For instance.. after being in hospital for 3 days on two different antibiotics and 10 days of the same meds orally, I was nicely healed and comfortable enough to attempt intimacy. In shorter courses there was a shorter time feeling well. With oral, acid based antibiotic the results were more dramatic which( despite negative test results) leads me to believe there is a "gut/possible candidas component.

    Did any of you experience a discharge from the vagina and under the clitoral hood? 

    My problems all started with itch in the anus and clitoral areas and with a visible "discharge". I find the deep horrible itch is worse when the discharge is more visible .

    I would apologize for TMI but I"m just going to go ahead and hope to goodness that I have found the place where giving too much is what might help us. No more silence...no more shame.

    • Morrell1951
      Morrell1951 micheala53583

      Posted

      Michaela, the wonderful thing about this specific group is there is no such thing as TMI. You mentioned a discharge from the clitoral hood. Please go over to this recent discussion of that very thing, yucky as it may be if you haven't experienced it. I for one was pretty gratified to hear Dr. Andrew Goldtein mention it near the beginning of his presentation.

      https://patient.info/forums/discuss/pseudocystic-smegma-abcess-295940

  • diann58300
    diann58300 hanny32508

    Posted

    First time on this website but want to add my experiences, I thought I was one of a very few people with LS but in the last few weeks have realised there are a lot of ladies with this condition.  I was diagnosed about 9 months ago after I had a sore crack by the lips of my vagina.  My doctor told me she had recently been on a course for LS and gave me Clob with strict instructions to use a very small amount every night for 6 weeks, then every other night for 6 weeks reducing accordingly then stop using.  However, after listening to Prof Goldstein who indicates constant use following warm bath then rubbing in Clob for at least  90 secs and staying on Clob forever, but my  flare up is not under control. I am seeing my doctor later today even though she has referred me to a consultant ( my apt has come through and is end January!)I wake every morning with a churning tum worrying about what is happening to me. I will let you know what she suggests.  
    • Morrell1951
      Morrell1951 diann58300

      Posted

      Hi Diann,

      I'm so glad you're here and that you've seen Dr. G's presentation. It's not so much that he's particularly special as gynaes go (mine has 1000 LS patients and is well-versed), but he's put this wonderful communication piece online. So, this is your GP who took a course in LS? Good for her. But yes, you need to keep using the clob – and more than twice a week during flares. Some of us go back to daily during them. We don't want cracks, because they scar and cause shrinkage and loss of architecture.

      My personal experience is that sugar is very bad, almost like gasoline on the flames of a flare-up. Suzanne, a regular here, just mentioned her love of watermelon as a possible culprit in her stubborn flare during her first few months on clob. If cutting way down on sugar should happen to work for you, it will work fast.

      And do your best to keep an oily barrier (something neutral like Vaseline or coconut oil) between the inflamed flesh and urine. (One of our regulars is a GP who posted about a study done on men's LS, circumcision and urine.) That could make a quick difference, too. Clob works very gradually and some flares out-race it.

    • diann58300
      diann58300 Morrell1951

      Posted

      Well - quick update - my doctor is referring me privately (at my request) to see a consultant. She has told me to keep on with the Clob so combined with that, I am giving up sugar and bread and see if this makes any difference.  Will keep you posted of progress. Thanks for your advice!  If anyone has any other suggestions they will be very welcome
    • suzanne00
      suzanne00 diann58300

      Posted

      Hi Diann--Yes, I think that a key may be reducing any simple carbs because sugar and insulin output is inflammatory and may heat up this LS.  As Morrell indicated, I think that my love of watermelon may have beeb doing me in (causing a flare), so I have just stopped eating it.  sad  I've been really strict about eating whole and unprocessed foods to slow my autoimmune issues, but that watermelon snuck in anyway!  So, here's to all of us on our journey to better eating!  Please keep us posted on how you are doing!  --Suzanne
    • diann58300
      diann58300 suzanne00

      Posted

      Lovely to get your thoughts on flare ups. I do suffer with asthma too and my symptoms all seem to have started this time last year when I was on steroids + steroid inhaler and antibiotics. This followed by thrush in my mouth then the first signs of something not right in my lower area, which I assumed was thrush.  When the soreness didn't go away, I visited my doctor and she diagnosed LS.  This recent flare up has been troubling me for a couple of months now and the rest as they say - is history, but I am getting comfort from reading other people's  experiences and don't feel so alone anymore,  thank you. 
    • hanny32508
      hanny32508 diann58300

      Posted

      Great to know that you are helped by reading about other's experiences..  Wishing you well, Diann.  
    • Morrell1951
      Morrell1951 diann58300

      Posted

      Looking forward to hearing about your appointment. And hoping the dietary changes have quick results.
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