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I've had this forever and nothing is helping

Posted , 15 users are following.

jessik
jessik

Hi,

I've never posted to any forum or really opened up to anyone about my ls. So here it goes... I have had LS for as long as I can remember but was not diagnosed til I was 18 after I had had a biopsy. I was prescribed clobatasol as treatment and am still using that even though it doesn't seem to help much and if I have any fissures causes extreme burning and increases the itching. I have tried emu oil to attempt to help with the tearing but it didn't help. I've tried baby rash cream still no help. I cannot have sexual intercourse and cannot afford a dilation set. I am mainly affected lower down by the vaginal opening. I am desperate for something that can help. I am always having flare ups and I'm just tired of not being able to even sit in certain chairs cause it causes way to much discomfort let alone have sexual intercourse. I need help. Please anything you can offer will be great.

3 likes, 16 replies

16 Replies

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  • claire12259
    claire12259 jessik

    Posted

    Try cutting out all sugars, possibly dairy and gluten, or do an elimination diet x

     

  • Dollyllama
    Dollyllama jessik

    Posted

    I second the cutting out of dairy, gluten, and sugar.  Worked for me!

     

  • Guppy007
    Guppy007 jessik

    Posted

    Hi there, Yep try cutting out all sugars including some carbohydrates and see how you go...you would need to do this quite strictly at first to make a difference and then you could introduce sugar treats over time.  It is just a case of listening to your body really and so try that first as that may be and often is the crux of the problem.

    If after a month or so you notice no diference then you should probably try going gluten free for a month.  For some people going gluten free changes everything for them, so its worth a shot.  Many on this site avoid dairy.  I have butter, and yogurt and drink oat, rice and soy milk and it works for me,

    Don't cut out everything at once, because apart from it being devastating you won't know what is the main culprit for you.

    I know it is awful having to focus on food and cutting out stuff you like but once you get on top of this constant flaring that your going through you will learn over time what you can comfortably eat without flaring.  

  • george_32756
    george_32756 jessik

    Posted

    Hey lovely, I feel so so bad for you. This condition is utterly awful. I’m not as bad as you but I can help with what these wobderful ladies have taught me so far. I’ve noticed a huge change in a short space of time. Fingers crossed it all stays positive for me! Right then! First thing!!! Borax baths!!! They really do help. I also started D3 tablets and felt much better within a week! Soak yourself in the bath and then rub your clob in for 90 seconds minimum. To start with I just used to apply it and go. Now I take my time to really rub it in after my bath. The skin just seems to accept it more after a bath. Also cut out sugar. I allow myself the odd little treat but try to avoid all sugars if I can help it. I’m so sorry your in such a bad way with this. I would also go to your DR and ask if they can prescribe you a dilator? May make it cheaper or even free for you? I hope your doing ok mentally. I find it so hard to have this condition but coming on this group has helped me no end. Xxxxxxxx
    • jessik
      jessik george_32756

      Posted

      I have my ups and downs with dealing with it but I am seeing someone so it helps. I'll do my best to cut out the sugars but I don't have much of a sweet tooth so that shouldn't be to much of a issue. Now the borax are you talking about the normal powder hand soap or a different kind? And how much should I put in the tub? Thank you all for the info and advice I really appreciate it!!

    • jessik
      jessik

      Posted

      Oh and how much D3 did you starr off with taking? How much do you recommend to take?
    • maryella
      maryella jessik

      Posted

      I too, need to know how much Borax to use.  Thinking I read a half cup, but not sure.  I was doing good until going to party, eating sugar, dairy and gluten, flare up next day!!. Pretty sure it was the sugar, but again it's important to eliminate one at a time.  Good luck to you!!!

  • gillian91143
    gillian91143 jessik

    Posted

    Hi there, i do feel for you and so young, mine have only started in the last year, i have took advice off this group and it's been ok , i also got some emuaid cream that is amazing, i stopped eating oranges, i found when i ate them it would flare up, so that's one thing i can't eat, i can't have bubble baths anymore, I'm now trying to stop the sugar,that is going to be hard because i got a sweet tooth,

    This is a fab group,

    I'm 58, i have put mine done to the menopause.

    I hope something works for xxxx

  • jared8423
    jared8423 jessik

    Posted

    could you all explain a little more exactly what you mean by eliminating sugar...The body needs a certain amount of sugar...so do you all just mean sweets or also carbs too? like are potatoes and rice bad?
    • gillian91143
      gillian91143 jared8423

      Posted

      I try and stop eating cake and sweets, chocolate is my worse thing and I'm cutting down on carbs

    • Guppy007
      Guppy007 jared8423

      Posted

      I'm no expert, but put simply, rice and potatoes turn into sugar once consumed. So, if you have had a day of indulging in sweet stuff and then eat these kinds of foods on top of that then you are going to have problems.  The way to look at it is that you have to be really strong at first to eliminate a lot of stuff until your flare goes away. This is why people continue to suffer because it is very hard to be disciplined.   Once you have it under control there is no reason not to slowly bring back some sweet stuff..I've simplified this explanation, but you get the idea.

  • bunny00903
    bunny00903 jessik

    Posted

    The best thing that I found to help with LS is a washing cream.  I order it on Amazon.  It takes a while to get because it comes from the UK.  I order two at a time now.  It's not expensive.  I use it to wash with instead of soap.  It has really cut down on the inflammation.  It is called Aqueous Emollient Cream.  SLS Free.  The company is Care+  It is a soap substitute.  I tried cutting sugar and carbs.  It didn't work for me.  I also tried the vaginal laser Mona Lisa treatment.  It was to painful and I stopped after one time.  I'm back to the stand by Clobetasol cream for outbreaks.  I hope they find a cure for this someday.

    • jessik
      jessik bunny00903

      Posted

      I'll look into the soap. Thank you. I wish they would find a cure too.

  • Bridge_of_Sighs
    Bridge_of_Sighs jessik

    Posted

    Can I also recommend Epaderm ointment from the UK as a soap substitute, it can reduce the itching too. It's a standard over the counter purchase here. It's been really helpful for me. I'm trying to post a picture of it here and it won't work. I'll try putting in a link,

    http://www.epaderm.com/products/epaderm-ointment/

  • arlee
    arlee jessik

    Posted

    Did you ask your doctor for another ointment? There are others that are not as strong as clob. My doctor told me to use baby oil - unscented. Massage in area well. And u can also put some on cotton pad and dab it on 
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