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What is it exactly that causes fusing ? What all is considered a "flare up".

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judy02533
judy02533

I thought I was doing so well.  I actually thought I had LS under control...for about 3 weeks.  Now I am fusing more and fast.  Before the clitorus was fused over, but now it is very scarred and decreasing in size.  My labia majora , on the side where I had no fusing, is now fusing.  I do have some itching, at night only.  No new white patches.  I never had white patches on clit.  I am using the triamcinolone every other day.  I rub on clitoris.  I'm using moisturizer. 

1. When you see the fusing and scarring increasing with no other symtoms is that considered a flare? 

2.  What causes the fusing ?  No white patches or itching where it is fusing. I constantly moisturizer so it isn't stickey.  

3.  Seems when I started making sure clit. was coverd with the triamcinolone it got worse.  Does that some times happen?

4.  What prevents the fusing...steroid or moisturizer ?

5.  I know different women are helped with different moisturizers....such as coconut oil vs emuil oil.  I always thought this was referring to what works for the irritation, itching, buring.  But does it also refer to fusing?  Might one moisturizer prevent fusing while another wouldn't?  Or do they all work same in relation to fusing?

 

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  • kathleen65757
    kathleen65757 judy02533

    Posted

    Only the steroid will stop the fusing. Maybe increase or change. I use Advantan fatty ointment every night at bedtime and I use a good amount of it.
    • judy02533
      judy02533 kathleen65757

      Posted

      Kathleen,  I can not believe how fast the fusion is progressing on my clitorus.  Every day it is worse...not just a little but a lot.  When I checked today, it looks as if the clitorus is mostly scar tissue and flat.  I Since being diag. I have not been as upset as I am now.  I always use moisturizer three or four times daily.  As far as the fusing, does the kind of moisturizer matter?  I need it stopped now. I don't have much time to try different things. Have you heard of it fusing this fast ..from one day to the next. I have an e-mail in to my doc.  But I don't know that she can tell me any more that you ladies.  
    • kathleen65757
      kathleen65757 judy02533

      Posted

      The moisturiser will not help that! You need to be attacking it with your cream/ointment. Increase when and how much you use to pull it up!

      I use my Advantan fatty ointment every night and if that was happening I would also apply in the mornings til I had it under control.

    • kathleen65757
      kathleen65757 judy02533

      Posted

      You may need to change your cream. It may not be working or it may not agree with you. Perhaps see your specialist if you can to get a script. I do not know where you are or if Advantan fatty ointment is available there but something similar should be. Also, the ointment is better absorbed than a cream.
    • Guppy007
      Guppy007 judy02533

      Posted

      I agree that the moisturizer wont help with regard to fusion of the clitoris, you really need to be putting Clob on twice a day! I would really rub it in well, and hopefully you should start to see some improvement. 
  • hanny32508
    hanny32508 judy02533

    Posted

    With some people it seems that the glob is stopping the fusing. My experience is a different one - for me it has been a combination of things that made that the fusing let go:  glob, diet, baking soda baths and rinses, supplements, dilation.  

    The realization that nothing will cure this disease was the toughest part for me to overcome.  LS needs constant maintenance and once you have figured out what works for you it then becomes liveable.   

    • judy02533
      judy02533 hanny32508

      Posted

      Hanny you are right I think that is what I am ging through now...accepting that I have  LS and that I will need to do maintenence.  I thought I had been doing maintenence with the exception of the diet.  I thought I could get by without watching my diet....a way of denying. 

       

  • Morrell1951
    Morrell1951 judy02533

    Posted

    Judy, I'm afraid your questions are the ones we all ask and they may have different answers for different cases. The fusing around the labia and over the clitoris seems to march on relentlessly. The adhesions that pulled in my perineum and started to close my vagina were reversible. Stretching opened them and they healed open. I have had no symptoms forward of my perineum since I gave up sex. I believe they were caused by friction. Urine is inevitable so that must be what keeps the perineum active.
    • judy02533
      judy02533 Morrell1951

      Posted

      What scares me is while I am trying different things to stop the fusing, it is getting worse.  I am afriad that it will keep getting worse, and l will end up looking like some of the horrible pictures I've seen. 
  • andrea58721
    andrea58721 judy02533

    Posted

    Thanks for the good questions, Judy. Seems to me practitioners should have these questions and answers for us the first day we visit! (Kvetch, kvetch.... smile

     

  • Guppy007
    Guppy007 judy02533

    Posted

     I have found using lubrication and diet (low sugar) stops the fusing.  It's worth remembering that no one at this point really knows enough to categorically state what works for certain,  we are all just giving our own advice, views,  based on our own individual successes with Lichen Sclerosus, which, of course, is slightly flawed as we all react differently to treatment!! 

    That being said, I will answer your questions as best I can.

    1. I would say no.  I consider a flare up to be when I have cuts, sores, spots, pain in the clitoris etc, that to me is a flare up.  Fusing and scarring happen over time, slowly, often with no other symptoms, it is just another insidious aspect of LS...this is only my view of course.

    2. No one really knows what causes the fusing, I suspect it's more likely to happen though when sleeping.  I just make sure that I apply some sort of oil between my labia minora and labia majora before bed, and constantly throughout the day.

    3. It's possible.  I used Clob near my Vjay and all hell broke loose the next day, with a horrific rash, which was odd as Clob helps me in many other areas of my Vjay.

    4. I believe it to be the oils, which coats the inner lips and stops them from "sticking" to the outer lips, especially when sleeping.

    5. I use the oils (Emu, Coconut) to prevent fusing, I cannot imagine them stopping itching.....but I know they do for some women.  I think many women  find Witch Hazel helps for the itching, but I dont really experience the itching much.   I can tell you that the first and last time I had the itching was after eating a LOT of sweet stuff one weekend.....that was my punishment...you really can't underestimate the importance of no sugar with this condition, Hanny, on this site, warned me, but I didn't really believe her (some things you just don't want to face) and of course, I had a terrible flare up, never to be forgotten and that's when I really started to  cut back...now I am quite sick and can't eat any chocolate even if I wanted to, as I am sulfite intolerant (Sigh)   

    Best advice I can give you is to always eat Organic Food if you are able to. 

    • judy02533
      judy02533 Guppy007

      Posted

      Thank you so much Guppy so taking the time to ans my questions. I am using a lot of moisturizers.  But I have to admit a week ago I went through two days of eating sweets.  But I'm not irritated,  just a little  itching and a lot of fusing.  Like you,  I just keep thinking how can it be the sugar....hoping it isn't.  I started reading labels and can't believe how much sugar is in so many of our foods. Do you think eating sweets could cause the fusing?    
    • Guppy007
      Guppy007 judy02533

      Posted

      I do think that too much sugar could be responsible for the  itching many women experience, and then that in turn can cause Candida, vaginal and oral,  which for some women then causes a Lichen Sclerosus flare up, and so its not great, but no one knows for sure exactly what causes the fusing, or any of the numerous symptoms of LS.   
    • sandra01720
      sandra01720 Guppy007

      Posted

      How strict should one be? At the start I hardly had any sugar at all. Now sometimes I snitch a bit here and a little more there. Drink a few swallows of pop or juice occasionally. And so on...
    • hanny32508
      hanny32508 sandra01720

      Posted

      I have been strict for a very long time and it did pay off.  But I'm not a saint and life all around me is often tempting.  So I have 'invented' some things that make me cheat in small ways.  My weakness for instance is licorice, so I have allowed myself two small pieces a day.  For other sweet cravings I take an apple. Carrots also are a good substitute for 'wanting something to chew on' and they are good for you to boot.  

      And I make mistakes as well. Like the other day when I didn't realize the cheese hidden in a platter.  (cheeses are a sure trigger for me)  But at least I learned to recognize the early symptoms of LS reacting.  I then can act fast to 'cool it'.  

       

    • sandra01720
      sandra01720 hanny32508

      Posted

      You seem to have such a good understanding of it! Thanks for sharing your wisdom. I share a weakness for licorice!
    • Morrell1951
      Morrell1951 sandra01720

      Posted

      I just know that my worst-ever flare-up (2 years ago or so) happened during a period when I was eating piles of sweets. And looking back over my 40 years of LS and psoriasis, the two have gone hand-in-hand. Now I have two heaping spoons of sugar in my coffee, twice a day. All summer I may have had a total of six kiddie-size ice cream cones. I no longer order dessert in restaurants, I don't bake much and I never buy candy. I'll have one cookie. I don't eat piles of fruit, either. It's not a hardship eating like this. When I was pigging out on chocolate and donuts and butter tarts, I was eating out of anxiety.
    • judy02533
      judy02533 Morrell1951

      Posted

      I need to just accept that sugar triggers my flare ups.  Last week in one day I ate 3 sugar donuts.  I am ashamed to admit it.  But I was stressed, tired and at the time, told myself it didn't matter.  Because I was doing so good I believed that it probaly was controlled and wouldn't come back. Some of you ladies seem so calm and consistent.  You have a routine and follow it completely. You know what helps you and what doesn't.  It's been 4 mo. since my diagnosis, and I still don't know what helps me the most.  I do however know that sugar is BAD for me.   
    • kathleen65757
      kathleen65757 judy02533

      Posted

      Too much sugar is bad for everyone.

      Honey is a good substitute. I am a diabetic so avoid sugar mostly but occasional or limited use for some people is okay.

      Some of my children who have food allergies or intolerances do use sugar without any consequences. But they do not have heaps of it.

      My specialists for LS do not advise against any foods but I have never been able to have a lot of sugar.

      I suspect it is individual.

    • Guppy007
      Guppy007 sandra01720

      Posted

      Why not keep a food diary for a short while? place it on the kitchen counter, and every time you eat something write it down, you will only need to do this for about a month.  The value of this is that it will give you a clear idea of what you are eating, as often we don't always  realise just how much sugar we are actually having.   Also, you have to choose carefully, if you love sugar in your tea first thing in the morning, have it, but just don't have a jam doughnut with it. Because we all react differently it is difficult to say what people should and shouldn't eat, this is why you have to find out for yourself, and why a food diary can help
    • Morrell1951
      Morrell1951 judy02533

      Posted

      It's really hard if there's someone else in the house who can eat all the sugar they want. I'm alone now and I just don't do it. The few desserts I make occasionally are not very sweet – apple pie, fruit crisp and some seedy cookies with coconut oil and dried fruit and lots of oats and seeds. I bake my own white buns so when I have the munchies I thaw one bun and have it with butter and a tiny bit of my strawberry jam. If I go to Canada's famous Tim Horton's donuts for coffee, I have the smallest, plainest old-fashioned donut they sell. It's become a habit.
    • sandra01720
      sandra01720 Guppy007

      Posted

      I have started a diary. Don't write everything down but try to write the most likely irritants. Ah but I've gotten sloppy with my diary again. Need to get back into it.

      I notice when I eat unhealthy foods like potato chips, I tend to get itchy. I guess the outer the diet the better. Thanks for the tips to all you ladies!

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