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LS Misery

Posted , 10 users are following.

sharon64989
sharon64989

Hi all, went to docs and they think i have LS. Strong steroid ointment now being used and they have referred me to a gyno so await that. I have to say reading some of the medical sites has totally freaked me out and i feel quite down about how this may effect me going forward. the increased risk of cancer, painful sex, loss of structure of the labia/vagina etc had me in tears this weekend. however i am trying to be sensible and help myself as much as possible by knowing all the facts. its a bit overwhelming so i wondered if you could give me you tops do and donts as a starter. some key Qs

  1. most sites say no bath, i presume because of the perfume bubbles but I love a bath -is that any products i could add to make it ok to have bath?
  2. what is the best underwear to buy (I was all ready to go out and get %100 cotton but notice some post say cotton bad) ?
  3. diet - what to eat/what not to ?
  4. what body wash / intimate wash do you use?
  5. most of you seem to suggest using a barrier type product as well as the steriod - what is best and is this necessary or only if you are itchy (i was itchy at first but not now, used Aveeno body lotion on outer area for a bit but now stopped)?

    Sorry for all the questions x

1 like, 15 replies

15 Replies

  • caroline96176
    caroline96176 sharon64989

    Posted

    Hello Sharon, its such a shock, isn't it? Had you even heard of LS? Before I say anything in reply to your questions, please remember that we are all different. I have only ever had one bad flare up at the beginning and got prescriptions for Clobetasol Propionate (which I now use once a week), DERMOL 500 (which I use in the BATH) - dont use very hot water - Hydromol moisturiser which I use after every toilet visit, cotton pants, I check the affected area once a week to keep a check on things and I go to my GP if i am worried about anything. I don't eat sugar any more but thats about it. I know its not easy, but try not to worry as anxiety always makes everything worse. I hope this helps and I wish you well.

    • sharon64989
      sharon64989 caroline96176

      Posted

      hi Caroline, no i had not heard of it before but suspect i will become and expert over the next few months. thank you for all your advise. no sugar is going to be hard for me as i love chocolate and cake but if it helps prevent flare up it will be worth it. can i ask, in your experience and others you've spoken to, do the white patches ever completely go or are they always there and just vary in severity?

  • sarb73328
    sarb73328 sharon64989

    Posted

    dont despair you will get it under control once you find whats best for you.

    epiderm ointment to wash, NEVER soap

    cotton underwear

    bathe in weak borax solution or epsom salts

    coconut oil, emuaid, cetraben for moisturising/barrier

    Depending on your age: ovestin ointment (topical oestrogen)

    vitamin supplements esp D

    above all dont give up steroid ointment as directed by your doctor

    hope that helps, but you will find your own products that suit you I am sure.

  • Runnerduck123
    Runnerduck123 sharon64989

    Posted

    Hiya,

    Sorry to hear about LS.

    I've had it for about 10 years. Flew through the menopause without a single hot flush but ended up with this instead. I'd owned my first horse for 3 years prior but now don't ride because of this, depressing. But hey, there's a lot worse things to have I've decided.

    I bathe every night, love my baths, I use aqueous cream as a soap for my bits, been using for a long time.

    I've always worn cotton pants, good old M and S.

    Don't have a special diet, but a healthy one.

    I have never used an intimate wash just aqueous cream.

    If you find a cure tell me.

    I have a lovely husband but sex is uncomfortable so I just sort him out!!

  • SnappyCat
    SnappyCat sharon64989

    Posted

    Hi - Not to fret...

    1. Baths are GREAT...I try to do it 5 nights a week and it is MOST helpful. NO SOAP!!! I use Betacept (which is sort of like Hibiclens). about a tsp to the tub. Do this before your steroid ointment and it helps it get absorbed. Also cleans the tub and jets...
    2. Cotton undies or a 100% cotton reusable mentrual pad. I make my own pads because all the oils soak through to my pants ...not a good look.
    3. NO SUGAR. Limited dairy, very limited gluten, and limited beef, for me. I can eat beef, but several nights in a row is bad.
    4. Body wash - use water only unless you need to get some sort of irritant off of you. Then Dove unscented for sensitive skin.
    5. I get Vitamin e capsules at Sam's Club...member's mark brand. Poke them open and use 2 or 3 in the morning. It is so sticky that it stays all day. Before that I was using coconut oil, aloe vera gel and/or vaseline. But I like the Vit E better.
    6. Ask your Doc for a scrip for Nystatin. Your steroid will make you prone to yeast infections (external). It is better to have something on hand rather than have to call each time.
    7. Consider a bidet - I got a hand-held hose type that attaches to the toilet (like about $35). Reduces the use of TP...just pat dry rather than wipe. Very soothing and gets the urine or poo off of you before you dry. Huge plus.

    That's my hints...

    • Guest
      Guest SnappyCat

      Posted

      Dear Snappy,

      Thank you for the Vit E idea. I had been using only coconut oil and some Eucerin both of which help. Vaseline no good. We have Sam's Club up the road so will get some soon. Interesting you can't eat beef or dairy and I can eat all of it I want. Am also taking oregano oil and pine bark capsules. . Question- do you meditate or do any mind-calming exercises?

      Am reading this book on balancing your chakras, a Hindu concept, eastern medicine. Since the mind and body are connected and since stress causes inflammation and LS is an inflammatory disease, I felt the eastern side of med was worth looking into. Perhaps our minds are leading us into this quasi-inflamed state.

    • SnappyCat
      SnappyCat Guest

      Posted

      Eggbiscuit, A few asides:

      1. I tried a different vitamin e not long after I was diagnosed. That one didn't work. I've gone back and looked at the bottles. The one that I didn't like was a better "brand" but it had soybean oil.
      2. I was at Mom's a few weeks ago and she had a bottle of Trader Joe's vitamin e oil. So I used a tad of it...started a bit of a flare - even used soap to get it off and cleared up immediately..looked closer at the bottle. soybean oil. Guess I have a problem with soybean oil.
      3. So read the bottles of your vitamin e's
      4. No, I don't meditate (my husband does). I go pull weeds in the garden or kayak instead.
    • Guest
      Guest SnappyCat

      Posted

      Hi, Thanks for the additional info. Yes, all soybeans in the US are genetically modified and that may have caused your reaction. I have ordered some natural Vit E from Puritans Pride. We are going to Sam's Friday as well. Wish I knew what I have but, thanks to my investigate skills and you ladies on here, I'm better than I would be. Heck, we all are..

  • karen23320
    karen23320 sharon64989

    Posted

    SHARON64-

    Hang in there and tey not to overread and freak out!

    1. I take baths with 1/2 cup baking soda and 1/3 cup food- grade borax in water. EPSOM salts are also fine.
    2. I wear 100% COTTON PANTIES from AMAZON. I am 48, still get my period every 28 days and use 100% organic tampons and panty liners ( VEEDA and Rael)
    3. LIMIT sugar, grains- seems to be different for everyone, but def. sugar!
    4. I only use CETAPHIL cleanser
    5. I only used a barrier after peeing when I had open cuts/ sores. After I put on my CLOBETOSOL steroid, I moisturize with v- magic, coconut oil or emuaid regular.

    GOOD LUCK TO YOU! we are all here for you!

    Karen

  • caroline96176
    caroline96176 sharon64989

    Posted

    Hi again, I was the very same when i was diagnosed. I was obsessed with joining LS groups to find out more, and also to read as much as I could about LS. Very soon, i realised it was too much to take in and process, and was in fact, depressing me so i had to take a step back. I found one lady who really helped me. I felt ashamed and isolated and hadnt even told my husband. Her advice was to tell my family and friends, and i felt much better immediately. I know what can happen, but as long as I keep calm, don't obsess about it, and remember to smile and carry on with life, I find I am more able to cope. I hope you find a friend who stands out from the crowd who 'speaks' to you. x

  • Nancy_K_B
    Nancy_K_B sharon64989

    Posted

    Hi Sharon! welcome to our little women's group...

    In regards bathing - I too love a bath esp all winter.. And, I've always loved them to be hot; no problems here in my experience.Bathing with a few large handfuls of boron powder which is very alkaline it quite helpful. If you don't have that, adding some baking soda does about the same job; it's not quite as alkaline pH as boron/borax but also helps.

    I agree with others about no underwear when things are particularly uncomfortable. but otherwise, cotton doesn't cause me any problems. Others experience may vary.

    THe barrier type product ( diaper rash ointment with white zinc etc) is particularly helpful if you get tearing or cut skin. I used it a year ago when I was having problems with the anus/perineum, but haven't used it since.

    Ah, but food! I've become something of nerd researcher to discover the nutritional requirements to lessen autoimmune issues in general.

    You might like to read my list that I created last year from reading everything I could from medical professionals ( who dig deeper).

    https://patient.info/forums/discuss/nutritional-support-for-autoimmune-diseases-updated-for-several-skin-disorders-641279

    it still needs more updating but we've been learning that there is masive worldwide vitamin D deficiency and magnesium and more. so rebuilding our immune systems should help.

    This one was my first diving in to the subject and following the trail:

    https://patient.info/forums/discuss/pathway-into-and-out-of-autoimmune-diseases--661033

    be well....

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