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Just starting the nasty LS battle...

Posted , 7 users are following.

linda94703
linda94703

I seemed to be doing well until I learned that excessive physical activity without proper lubrication will produce a horrible 'flare'. Learning this stuff by the seat of your pants is not healthy. What is anyone using for inside to reduce the dry friction and excoriation? Most stuff burns which tells me that is a no no....glad to belong here now....

 

0 likes, 30 replies

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  • suzie37971
    suzie37971 linda94703

    Posted

    Hi i have used petroleum jelly massged in well when i was in the UK as a therapist my uniform was nylon and a nightmare but definatly cotton knickers and no panty liners .

    Now living in Spain Coconut Oil has become my saviour but still regular doucing after the toilet with my bicarb and water spray .

    Moisturise seems to be the key at all times 🤗

    Welcome to the LS group i cannot tell you how this has helped and supported me since newly diagnosis myself.

    But diet is a major factor 🤗😘

     

    • linda94703
      linda94703 suzie37971

      Posted

      I am so confused with treatment and diet concerns and mositurizers. I have been using petroleum jelly to help heal some of the excoriation and it has helpled. I have just looked and my tissue is very red around the uretha. Suggestions of how to get this calmed down. Cannot walk or sit much. The pain of this is ruining my life....

       

  • Krisj2901
    Krisj2901 linda94703

    Posted

    I always use a barrier wherever I go. I use aquaphor. It’s thick and has the consistency of Vaseline. It allows me

    To have more good days than bad days and has let me cut back on my steroids. 

    • linda94703
      linda94703 Krisj2901

      Posted

      Thank you Kris....? How do you know when you can cut back on the steroids?
    • Krisj2901
      Krisj2901 linda94703

      Posted

      When I first was diagnosed I was on halobetasol for 2months twice a day. After it was once a day for two weeks then down to once a day every other day. After that whenever I have a flare up I use it twice a day for one week to two weeks than once a day for a week. I use the barrier (aquaphor) whenever I need to put on underwear. It has become a life saver. I know when to cut back on the steroids when I feel like my “girly bits” are back to normal or when I can get through morning to night without think about this terrible thing!  
  • christine97462
    christine97462 linda94703

    Posted

    Hi Linda,

    Although I am new to LS, I am not new to autoimmune disease, or to severe skin problems in the vaginal/anal area.  I am a social worker, but also have an organic skin care business.  I am going to make an organic oil-based balm, infused with healing herbs, for myself.  If it works, I will let you all know, and would be happy to share.  I will not use vaseline, because it is petroleum-based, or anything else with preservatives/chemicals.  This is only my opinion for myself, but if any of you would like a healthier alternative, once I trial it, I'll let you know.  I'm so grateful for all of the information you share; it is so much more than what the doctors tell me.

    • christine97462
      christine97462 dani8979

      Posted

      Ok, I'll let you know how it goes!  I already make a diaper balm for babies, so really just have to tweek it for our particular issues; shouldn't take much trialing.

    • linda94703
      linda94703 christine97462

      Posted

      Oh please and bless you...the rawness is so painful...look forward to seeing what you come up with
    • christine97462
      christine97462 linda94703

      Posted

      Sorry you are in so much pain.  I'm trying my balm starting tomorrow.  I'll let you know.

  • suzie37971
    suzie37971 linda94703

    Posted

    Coco nut oil i find has been the best soothing and not having so many baths anymore seems to help me .

    Hope you find what works for you soon 😘

  • Guest
    Guest linda94703

    Posted

    Exercise used to be a nightmare for me too. Things are pretty good now since i started applying refined coconut oil to the area before working out ( vaseline was too sticky and chemical for me, viramin e was even worse- i am alergic to cortisone cream so can’t use it), changing my panties after working out, taking a sitz bath when i got home ( bought kitty litter bin from dollar store and fill it with hot water in tub then add borax and baking soda then sit in it for 15 minutes, then more coconut oil)-this tones the irritation down significantly for me.  I almost never use soap anymore too. Goid luck!
    • linda94703
      linda94703 Guest

      Posted

      Rox, I was exercising 2-3 times a week when I had my first major flare and it was bad, the pain was horrible..could not even sit. I am concerned about doing sitz baths anymore because the tissue peeled away on me and I had a red streak. Still have an area that is angry and red in the upper area, just won't go away. A biopsy was done and with God's grace it was not cancer. The Clobetasol is not helping with a whole lot...have appointment with another specialist to hear what he thinks for treatment...  I miss my former active lifestyle. Are you able to ride a bike?

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