Posted , 14 users are following.

I am absolutely pulling my hair out. This LS is doing me in. Seriously thinking about sleeping when I can during the day and living as best I can during the night's. I'm 61 and my life is ruined. Does anyone else cry all day.

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27 Replies

  • Posted

    OH gosh, Aitch4, so sorry it's gotten to that point for you. 

    NO, NO Your life is not ruined. We can and DO reverse this disease. It is an autoimmune disease. Read up on everything about  the autoimmune diet protocol. NO sugar, alcohol. Also on Leaky Gut Syndrome, and candida symptoms and diet.

    For the topical pain relief, most of us are using one of several oils: castor oil, coconut oil and olive oil. Get some and slather it all over you and inside your vagina as well ( I rotate all three). 

    For backing out of this disease, two parts: 

    1. parasite and environmental toxins clean up

    2. the nutritional deficiencies have to be resolved. 

    VITAMIN D3 with its cofactors:



    Omega-3 oil



    those above are absolute base line. ALSO consider Selenium, MSM, VItamin B Complex, Vitamin C

    Be well, discover  renewed health dear Aitch. 


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  • Posted

    Hello Aitch, sorry that your struggling. Can you tell us what symptoms you have and are you on steroid cream. LS can be managed quite well but it initially takes some work.
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  • Posted

    Thank you for caring. Symptoms are severe itching and scratching. I have tiny little cuts all over me Inc my anal passage and area surrounding vagina. I also have piles/pyles I have other sores on my chest, arms, legs. Dr gave me e45. Next visit betnovate. Next visit dermovate. I became very angry with my grandchildren yesterday and now I hate myself. I have now been referred to a specialist.
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    • Posted

      Hi Aitch, I am just going to list for you in order of 'importance' tips for LS.

      Sugar is the biggest problem for people with LS, and I would wager that is why you are suffering so much.  It is not just a case of stopping the chocolate, donunuts with coffee etc, it is watching what you eat as a whole every day.  My advice would be to tackle this like a military operation .. Cut out all sugars for a month..this will give your body time to re balance itself.  Then, once you are on top of it you can slowly introduce treats..In no time at all you will notice the difference.

      If you find the above suggestion brings no relief whatsover, you then must try going gluten free.  For many women this is the one single thing that they have done which brings relief...but only do this if the above suggestion does not work.

      Try to eat less dairy.  I eat butter and yogurt, but thats it!! I LOVE Oat milk, rice and quinoa milk, soy milk.  I dont think a lot of dairy is good for us.

      Use a small bottle spray, (the sort hairdressers use) and fill it with water and a pinch of salt or a pinch of bicarbonate of soda.  After every bathroom visit spray your Vjay.  This eleminates any chance of irritation.

      Buy some Desitin cream, the stuff used for babies and put a tiny bit of that on your 'paper cuts'  The cuts that you are experiencing are because you are flaring.

      Use the steriod cream if you get white plaques of skin appearing or if you have trouble with your clitoris..those are the only times I have used the steriod cream as the desitin any case the reason you are flaring is through your diet and once you get on top of that you will get relief.

      Before bed and during the day if necessary you can use a little olive oil/castor oil/emu oil/coconut oil which keeps things lubricated.

      At the moment you are in crisis.  But once you get on top of this you will feel much better.

      Keep us all posted...

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  • Posted

    Hi I really feel for you poor thing. I have had LS for 26 years and what I have learned over that time is that I find that diet does help my LS. I am on a low carb, no sugar called a ketogenic diet also have reduced my alcohol intake to two glasses of wine at the weekend. At the moment I am in remission. I have also made a borax cream which helps with my LS There is a facebook page that deals with LS healing through borax.  hope this helps and that you find relief soon. But in my opinion diet is the way to go.

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    • Posted

      You're probably right. I started a new diet 2 days ago so fingers crossed. I'm also suffering from severe shaking and crying when the pain is really bad. Thank you for responding. Hugely appreciated.

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  • Posted

    Oh sweetheart please don’t be downhearted   We all know how dreadful this sneaky ugly 👹painful condition is but with the right management it can be tamed. 

    You are 61 and in a lot of discomfort.  Your grandchildren will not remember you lost it for a minute.  They will only know how much you love them ?? Let it go and concentrate on your total self 🙏🏻

    It seems to me you have been left on your own to cope Aitch   Well not any more    Everyone will try help   

    Don’t mean to make it sound like 20 ?? s  but how long you had

    L👹S ?  Did you have biopsy

    When are you seeing consultant ?  

    I noticed you said you know about food and drink. Does that mean you have taken (as far as possible) sugar dairy n red meat out of your diet ?  All of which are heat producing foods which LS thrives on ? 

    Big hug 🤗 

    Steph X 

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    • Posted

      Thank you for taking the time to write to me. I've had it for 4 weeks now. Yes I've stopped eating red meat sugar and dairy. I'm waiting to see a specialist at the hospital but also another specialist for the pyles too. Its making me so depressed probably due to lack of sleep. Thank you again.

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  • Posted

    Oh poor you Aitch4, I empatize with you.  Before I visited a female dermatologist  who specialises in LS I felt exactly the same.  She advised me to wash using Dermol not just in the area of LS but all over my body.  She prescribed ointment (steriod cream) to be used twice a day for a month and then on altnernate days for two weeks and after that twice a week.  She also prescribed Cetraben moisturising cream to be used everytime I went to the loo and to be used on tissue to clean myself after bowel movements.  She said to wear only white cotton underwear and not to use fabric conditioner when washing my underwear and never use liners.  At the moment I have very little difficulty but sometimes have a flareup and use the dermovate ointment more often.  I hope this is helpful for you it is really important that you speak to a doctor you understands the conditon so if possible I would bring as much information with me to see your G.P. and hopefully they will take the time to act on advice and either prescribe the correct meds and refer you to a dermatoligist.

    Hope this helps.

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    • Posted

      Thank you Geraldine for your lovely words. So nice to have so many people who understand LS to converse with. It really does help to talk about it. I havent seen my partner for over a week now as i dont live with him but i really have no desire to see him at all until this mess is cleared up. I can feel myself pushing him away from me. And I keep snapping at people I love. Thank you again.
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    • Posted

      Its perfectly understandable that you don't feel like intimate contact with your partner.  I've been married for almost 40 years and find that my husband has really no understanding at all of this condition and I find it really difficult to explain how I feel so its great to hear that other people have similar problems.

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