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Worried about LS lasting forever

Posted , 12 users are following.

Rainbow10
Rainbow10

Just joined the group which seems to be a fantastic and supportive forum. I was diagnosed in 2015 and decided not to use steroids; started using Emuaid and it was almost like magic, couldn't believe the relief from itching etc. I do a lot of walking/cycling and todate this horrible condition has not affected my life style. But over the last few months the LS seems to have flared up mainly around the anus  but also the genitals  and red patches at the top inside thigh - but not as bad. Going to see GP next week and in the meantime still using Emuaid but not as effective - wonder whether the magic has worn off and this is getting really serious now. I'm so confused with all the different remedies and don't know what to do now - trying to be positive but feeling very down. Am 64 and otherwise in excellent health, fit and active. I never thought I'd be entering my old age with  such a horrible condition. Not in a relationship at the moment and now feel I never will be and have a lonely time ahead. A big thank you to all who read my post as the thought of others knowing what am going through feels warm.

3 likes, 19 replies

19 Replies

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  • hanny32508
    hanny32508 Rainbow10

    Posted

    Not hard to imagine that you're down.  Especially in the beginning it is hard and you're thinking of having sexual limitations.  But I have to tell you that it doesn't have to be that way.  

    ?There are some very helpful things I learned, to keep all nicely under control and have an intimate relation again.  One - baking soda baths and rinses.  Or borax baths and rinses.  Cutting out added sugar is another.  I live with a strict diet - no sugar, no alcohol, no gluten, limited dairy.  Though that part is a bit different from person to person.  For many taking away the added sugar has made a difference.  

    ?Regular dilation is another.  Using a moisturizer such as coconut oil, I won't live without it.  Taking supplements like D3 for one.  

    ?All have helped me to get LS nicely under control.

    No it will never leave you, but a person can make it very liveable.  

    Hope this will give you a start. 

    • Rainbow10
      Rainbow10 hanny32508

      Posted

      Hi Hanny thanks so much for your thoughtful and supportive reply. I’ll try the diet changes which shouldn’t be too difficult as I pretty much avoid the food stufff you mention as pasty of my normal diet but would need to cut them out completely. Have you also eliminated dry/fresh fruit to cut out sugar? That’s going to be the difficult one for me - love my fruit and porridge! Does dairy also mean no live bio yoghurt? Apologies if am asking some silly questions but as you can imagine I’m in a bit of a head spin right now.
    • Guppy007
      Guppy007 Rainbow10

      Posted

      Hi Rainbow, if I may just chime in regarding food.  My view is not to cut everything out, for example, if you are flaring then it makes sense not to over eat too much fruit, but once stable I see no harm in having fruit in moderation, fruit is good for you.  With regard to dairy, I drink Oat milk, soy milk, and rice and Quinoa milk, a different one every week and it is delicious.  The only dairy I have is butter on toast and sometimes yogurt..I have a feeling that dairy isnt that great for people. 

      Truth is that we all react differently and therefore you will have to judge for yourself what works for you and what doesnt.

  • Guppy007
    Guppy007 Rainbow10

    Posted

    Hi there, once you come to terms with it and are feeling less stressed you will find you will be able to manage your LS. It is a horrible shock at first but there are worst things. Read as much as you can re LS, become informed. It is important to see the right people as GP dont know much about LS. A vulvar clinic would be the best place. Welcome.
    • Rainbow10
      Rainbow10 Guppy007

      Posted

      Thanks for your words of encouragement; I already feel less alone.
  • hope4cure
    hope4cure Rainbow10

    Posted

    I know this is going to sound strange desitin for diaper rash is a great way to help heal the lessons. The zinc in it helps dry out the lessons as well as medicated Vicks or vacesline. Steroid foam is the quickest way to dry out the lesions. 

    Good luck. 

    • Rainbow10
      Rainbow10 hope4cure

      Posted

      Thank you ‘hope4cure’ I guess it’s going to be trial and a lot of error before I get the ‘right’ solution for me.
  • hope4cure
    hope4cure Rainbow10

    Posted

    I hope you find it soon! Have you googles natural treatments for LS?

    inreally swear by desitin. It's messy but well worth it. 

  • Bridge_of_Sighs
    Bridge_of_Sighs Rainbow10

    Posted

    Hi, my homeopath says she notices the same problem with all the skin problems she treats. You find something which is brilliant and then, after a little while, it stops being so good. Many of us here find that having two or three things that work and rotating them is a way to deal with that. I also do an occasional burst of steroid for a couple of weeks now and again.

    Weleda Diaper Care cream with calendula is also good. I suppose Diaper/nappy cream is a logical thing to use because it's a barrier to urine, which irritates LS, and also soothing.

    There's lots of advice on this site, in time you will find a routine and range of products which suit you. Try everything you like the sound of here, buy yourself nice things (without fragrance) and good luck. You are not alone, and we are all here ready to offer help and support.

    Bridge

     

  • sarb73328
    sarb73328 Rainbow10

    Posted

    Hi Rainbow1, I am 64 too and was (finally) diagnosed last year although I think I had LS since 2013. I am with Hanny, it does seem that we can control it using moisturisers - varying them because I believe we become 'tolerant' of various creams after a while and the LS gets around them. That's maybe what has happened with your Emuaid. I've used Emuaid, Coconut oil, Zinc and Castor, Emu oil. I wash with Epaderm, swab with borax. Use oestrogen cream 3 times a week. Take D3. I have yet to brace myself to try limiting my diet, but I don't eat junk. The best thing so far for me though has been steroid, Betnovate, which has reversed some fusing. My GP has now suggested I stop it for a while. I do still have irritation but I wouldn't call it an itch, more an awareness/fizzing in the area which I can tune out to certain extent. 

    There is hope!   

    • Rainbow10
      Rainbow10 sarb73328

      Posted

      Thanks for your message of hope Sarb. Yeah am in the process of trying different concoctions, such as castor oil ; lemongrass and lavender. The main LS area seems to be around my anus but clearly my genitals are also affected but not too severe at the moment. I guess when over the last couple of days I noticed red blotches on the top inside of my thigh I knew it was progressing. Am also thinking about diet and like you also eat healthy etc etc. I've started to take curcumin extract from time tumeric with peperine - black pepper as it helps absorption; also liver cleansing tablets. The next potion to buy will be D3.

      I

    • sarb73328
      sarb73328 Rainbow10

      Posted

      Never heard of curcumin? Will look that up. so good that we share all these things on here.
  • sandra01720
    sandra01720 Rainbow10

    Posted

    Emuaid is one of my favourites too!  I do find that I need to rotate products. The very thing that helped me will start irritating it after awhile. Put your Emuaid off to the side for awhile and try extra virgin cold pressed  olive oil, jojoba oil, castor oil, witch hazel (with no alcohol), some like coconut oil which makes me itchy!  

    I do use some steroid though. I find on occasion I do need that boost. 

    • Rainbow10
      Rainbow10 sandra01720

      Posted

      Thanks for tips - heard oregano oil with coconut oil can help - so that’s my next potion.
    • Bridge_of_Sighs
      Bridge_of_Sighs Rainbow10

      Posted

      Please feed back, that's an interesting combination. I've overused coconut oil and got sensitive to it, but I'm curious about the oregano. Maybe in a different carrier...?

    • Rainbow10
      Rainbow10 Bridge_of_Sighs

      Posted

      Will do, started it today.ratio is 5 drops of oregano oil and 2 teaspoons of coconut oil. This can be increased over time to 25 drops O oil if no adverse reactions.   Horrible condition but must admit I smell nice using all these oils!!
    • lynn_78641
      lynn_78641 Rainbow10

      Posted

      Good to know that you use this combo. I was reading about oregano oil today and stupidly tried it - 2 drops one on each inner thigh about 2” away from the affected areas and I had an insane deep painful itchy reaction that was so scary- it went immediately to my LS area and I had to wipe it off with a damp cloth! That’s how strong it is! Now I know why it needs to dilute! Let us know if it helps you!!
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