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Washing you vagina with LS

Posted , 18 users are following.

juliann71885
juliann71885

Hey folks,

I’m so excited I found this group! I was diagnosed with LS when I was 22, I’m 25 now and I finally found a doctor that is knowledgeable about the condition (she’ll never know the hero she is to me), she is a dermatologist that specializes in vulvar dermatology. When I was first having issues I figured out pretty quickly that scented soaps were irritating, but my doctor said not to use any kind of soap when washing my vagina. How do you ladies clean yourself? I feel like just water isn’t quite enough. Thanks in advance! 

4 likes, 31 replies

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  • susan43705
    susan43705 juliann71885

    Posted

    Hi Juliann,  I'm curious what treatment plan  your doctor gave you.  

    I bought Emu soap, which is an all natural, hand-made soap containing Emu Oil. It's very moisturizing.  I stopped using the perfumed soaps.  Not sure it is helping.  Right now I"m a mess down under trying to control the LS monster.  I too feel that water isn't enough.

    • juliann71885
      juliann71885 susan43705

      Posted

      The only treatment plan right now is using clob once a week and taking a bath twice a week and moisturizing with vasaline in between times. I used the clob for three months straight and it cleared things up pretty well for me, though I know it doesn’t work for everyone. I’ve never heard of that soap, I’ll have to give it a try!
  • pat0423
    pat0423 juliann71885

    Edited

    I too feel water isn’t enough so I soak in a baking soda bath and in between I use a tiny bit of watered down Dr Bronners mild soap. I might get emu oil soap too. 

    I had a few good days, but back at it again. I’m at my wits end with this disease and none of my drs are of any use. Will read the Dee site you posted earlier Susan. ❤️

    • juliann71885
      juliann71885 pat0423

      Posted

      I’ve never tried baking soda in the bath, that’s another thing I keep reading on this forum that I’m going to have to try. 
    • susan43705
      susan43705 pat0423

      Posted

      I"m with you Pat, at my wits end!  I was in remission for about 2 years with no scarring and occasional itching, but I didn't use anything, and then it came back with a vegenance. HOpe the new info helps. Take it easy.  💗

    • pat0423
      pat0423 juliann71885

      Edited

      Juliann I also put a pinch of baking soda in a peri bottle (like for after childbirth) and rinse with every trip to the bathroom and just pat dry before applying my emu oil/aloe for moisture. Also sometimes using vitamin e oil or suppositories helps. I do that twice a week (my preference is using softgels vitamin, pinch it open and apply inside and out.  Best to you, glad you’re here. 
    • pat0423
      pat0423

      Posted

      Ugh a pinch and filled with water for the rinse. 😜💜

    • pat0423
      pat0423 susan43705

      Posted

      I feel so bad for you and I think know exactly what you’re going through. I’ve not had any remission from this yet but I look forward to one!! 7 months (milder symptoms previously) of HELL and structural damage/closing up... 

      This week I used my essential oil knowledge and tried some helichrysum hydro soul (floral water basically, much milder than the essential  oils) with my emu oil and it seemed to help more than anything thus far - until today. Tried not using steroid cream for just one day at same time as I was feeling so much better... but back at it today. The pulsating has resumed so I’m worried at it shrinking /fusing the last bit left! Truly trying all I know. Its a monster. 

      I still have hope that I will get better somehow. 

      Don’t freak out, it just makes it worse. 

      Sending you support and hugs!

    • pat0423
      pat0423

      Posted

      Helichrysum hydrosol!!!***
    • susan43705
      susan43705 pat0423

      Posted

      Hi Pat,  This LS has a mind of its own and doesn't want to be defeated.  I have a cornucopia of products and at this point in the down under mess not sure what to grab.  Probably will try the Clobestol mixed with Emuaid and see what tomorrow morning brings.  

      They say LS is hereditary.  Did anyone in your family have this?   If my Mom had it she would have told me.  I don't know anyone else.

    • pat0423
      pat0423 susan43705

      Posted

      Hi Susan. Hope it helps and you get a healing sleep & tomorrow is much better!

      I suspect my mom had it. We never talked about it per se but she had all kinds of issues- and ointments/creams plus had a terrible itch “down below” as she called it 🤣 every time she ate chocolate!! She’s been treated for cystitis years previous too. 

      I know autoimmune seems hereditary and that would include both parents for me. And I’m susceptible as I have another one already (since 19y/o, diagnosed at 47y/o), Ankylosing Spondylitis. I’m 58 now. 

      Sigh...

    • pat0423
      pat0423

      Edited

      PS I survived leukemia 9 years ago and I haven’t had anything that horrifying until this!!! And that is saying a lot. 

      We can’t give up. Hang in there my friend. 

  • karen23320
    karen23320 juliann71885

    Edited

    I bought Emuaid therapeutic cleansing bar for my whole body, including vag. I also like Cetaphil and make hubby wash himself with that before sex - no smell at all, very mild, gentle. 

  • Nancy_K_B
    Nancy_K_B juliann71885

    Edited

    HI Juliann, nice to meet you. we're so glad to have found this group too, all of us, no matter what age,  a worldwide english-speaking LS family women and men. 

    I personally have always used Dr. Bronner's 18 in 1 Pure Castile Soap made with organic coconut oil, olive oil, hemp oil etc.. I've used it for years ( I love the almond one) and feel no need to give it up as it is the same as what we put on our vijay anyway. 

    It depends on how our vagina is feeling any one day to decide how to clean. I use regular toilet paper and have no problem with it. I DO pat myself dry, not rub as we used to be able to do.  BUT I don't particularly baby myself when it comes to the wash cloth at all, if my backside is  being a bit roughed up skin down there I kinda want to offer it the opportunity (grin) to defoliate.    

    Hope this helps. And dearheart (smiles- I can call you this because I'm 72) do read the link that Susan sent in today.. it's quite amazing and positive outlook from a woman who had this for many years before figuring out this stuff and got healed! so keep your chip up and know that things can and will get better - you have a long wonderful life ahead of you. 

    oh, oh and if you have time do read the article I amassed of how to deal with autoimmune diseases - with references from doctors to what I found. We have GOT to build UP our immune systems.  blessings, Nancy, Asheville-Hendersonville NC USA

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

    • deethebee
      deethebee Nancy_K_B

      Posted

      Hi Nancy. Can you direct me to Susan's link? I doubt know how to find it as I'm not sure of the thread name. Thanks!

    • suzie37971
      suzie37971 Nancy_K_B

      Posted

      Hi Nancy , can you send me Susan’s link as i cannot access it as it may have been removed ? 😬

    • Nancy_K_B
      Nancy_K_B deethebee

      Posted

      hum susan has some numbers after her name... she should be in your email inbox, right, folks?  let's see... 

    • Nancy_K_B
      Nancy_K_B deethebee

      Posted

      HI Dee... I;ve tried twice now. so Id ont' know when It'll come through.... 

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