understanding ls

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i am 74 years old and am pretty sure i have had this condition for a long time before. i was officially diagnosed about 4 months ago by my internist just by a physical exam.  i don't know if anyone can answer this but i was wondering what it is that causes my discomfort - it feels like pinching.  i know what would cause pain if i broke a bone, got a cut or was hit on the head.  but what is the physiology that produces the stinging, pinching i feel.  thanks for listening.

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  • Posted

    Hi Eileen, (that's my middle name) I have read about every post and commeny on this site and have taken evwrything to heart. I was red and inflamed inside and constantly burning on the outside like razor burn. I have since changed my diet slowly and watching and writing down what triggers the burning/tickling more. I have found SUGAR is a big culprit along with certain breads and whole milk products. Skim milk I'm ok with. I do the borax sitz baths every day 20 minutes a day and I no longer have any irritation inside or out. After my sitz baths I keep 100%pure unrefined coconut oil on me. I hope you can find some relief and I hope my post offers some help. I'm always here if you wish to chat. Take care sweetheart.

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    • Posted

      OMG - sheila is my middle name.  yes i have cut out dairy products, never used sugar, and just started a semi-gluten free diet (still lots of stuff to use before totally gluten free).  i'm going to try that borax sitz bath and coconut oil  thanks.

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    • Posted

      That's so neat! Yeah I think with this mess we are willing to try any and everything to have a little sense of normalcy. Keep me posted on how your progress goes. Take care!

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    • Posted

      could you please just remind me about the borax solution - how much water to how much powder - thanks.  do you prefer coconut oil to emu oil?
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    • Posted

      Sure.. I use a sitz bath. It holds about 6-8cups of water. I take I tsp of borax and dilute it in 2 cups of very warm water and pour it into the sitz bath and the other 4-6 cups I do a lot less warmer. You don't want your water hot buy barely warm. Set and soak for just 20 minutes. When your finished no need to rinse just dry off. When I shower I use Cerve cleanser. It coats you and you feel more comfortable. Emoilents are best used for that area, no soap! I've had more luck with the borax than the baking soda but not everyone is the same. I myself have only used the coconut oil it works for me so I've just stuck with it. I've been doing the borax 2 weeks or so now and I will continue to do it daily to keep this at a bay. I think of it as a miracle.

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    • Posted

      Hi Eileen,  I'm 80 and had LS  diagnoised about five years ago.  On this blog I discovered an item that caught my eye and tried it.  BORAX, the twenty mule team type.  I used it each time I went into the bathroom.  IT WORKED.  I am also on Estrace 0.01 cream twice a week.  I boil a cup of water and add two teaspoons Borax and mix till clear.  When cool I add to a spray bottle, it will last about a week.  I finish up by using CeraVe, over he counter.  There are other brands but I used this when I had a cancer removed.  This is like a vasoline type product.  If you use just to keep the area free of urine that seems to add to comfort.  I healed in about 2-3 months.  I then had a diverticulosis bout and it returned, not bad, I started on the reguime again and it is totally gone again.  I still use the spray every day just to keep area clean.  My OB who had taken biopsy was very happy at my last check up.  You might want to get a bio to make sure. Keep your immune system up and Good luck, Hope this helps.  Bless us all.

       

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    • Posted

      Hi Sheila I need some advice as I am not sure what to use just now.  

      My Vagina is very red all up to my anus and on fire 🔥  I have seen Borax on this site but is it a laundry aid ! I am anxious not to make my obviously very fragile area even worse    Do I get it off amazon and what is Borax Slime ? 

      Help me if you can 🎶🎶I'm feeling down 🎶 

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    • Posted

      Hi sedg, oh I'm so sorry your hurting! I use a product in the laundry soap isle. Its called "20 mule team" it says borax on the box. Only about $4 for the box so it will go a long way. I have no clue what borax slime is, that's a new one on me. Buy you a sitz bath and use a teaspoon of borax in it. I felt better after one 20 minute soak. I soak every day now to keep it away. Also try using Cerve cleansing wash. I buy the equate brand its cheaper. NO SOAP in that area. Only water or emoilent washes. If I can help in any way please don't hesitate to all. I hope you feel better soon sweetheart!

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    • Posted

      Hi Sheila thank you for your help. 

      Do I understand it correctly that I buy Borax 20 mule type ??  Can I get it off Amazon ? Also CerVe which is something to use as a barrier as Pat is using.  

      It is apparent that in U.K. We are directed to steroid creams and in US alternative help comes in natural products. 

      I have had LS for over 16 years with several years in remission.  I also had procedure to remove scar tissue by an overzealous 'consultant' in 2009. Something I have since learnt should never have happened. I agreed without talking it through with anyone not even my 3 girls as I do not want them to even consider they may get this disease   😥

      The result was a very narrow perineum making healing very difficult as it hard to stabilise area near anus.  

      I only wish information like this had been available years ago. 

      Still,  starting again from today  I am gonna get it 👊🏻

       I am going in with all guns blazing Well Borax at least 😂

      LS has given a whole new meaning to 'Hot' 

      Love x

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    • Posted

      HELP I am in U.K.  Where do I buy Borax 20 Mule train   I have seen some on EBay but concerned that it is genuine 😳

      Thank you W??MEN OF LS 

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    • Posted

      Hi Sedg. Honey bless your heart. I'm so sorry you've had to under go so much. It is a horrible disease. One that needs to be studied more than it is.

      Amazon has the borax for purchase online. Just type in borax and a picture of the "20 mule team" borax pops up. You can also purchase the cerve on Amazon as well. The Cerve works as a barrier to help keep infection down and also to help with the burning.

      I wish this information were available years ago as well. I pray your daughters never have to go through this ordeal either. It's just to horrible. I'm just thankful that so many women are willing to share their stories so that we may learn from them and be there to lend a ear to those who need it because we understand what they are going through unlike so many Dr's. I hope you are doing ok and please keep me posted on how your doing.

      Hugs xoxo

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    • Posted

      Same thing as 20 mule team on Amazon.  Try ordering it.   For you out there that are leary about borax, after my Gyn checkup she said the borax is ok to use.  A very good GYN lady.
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  • Posted

    Dermatologist explained to me  that LS turns skin into desert and causes it to harden.   And dry skin causing itching makes sense.  

    I have also experienced the vulva stinging, itching and pain.  I try to moisturize all the time, use Clobetasol three nights a week and don't wear pants that rub this area.

    That pretty much works for me.  I think I do have some tightening (agglutination I think is how spelled) and hope no further deterioration.  I am 60.  I had problem in my 20s and it went into remission and has come back.

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