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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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  • elle2424
    elle2424 linda94703

    Posted

    I haven’t been using anything lubricant but i know people on here recommend organic coconut oil. 

    Not sure about Vaseline?? Anyone have any thoughts?

    I exercise a lot and the biggest thing I’ve learned is to shower and get out of your sweaty clothes immediately. Otherwise I get a flare. 

    My LS is pretty manageable with the Clobetesol. Though I had a painful flare this week and it sucked. 

    Wishing you luck! 

    • dani8979
      dani8979 elle2424

      Posted

      Depends where you are in the world....in Britain, there is Hydromol ointment, very thick and can be used as a barrier  and you can wash with, as well. Go to your doctor and ask him to prescribe you a barrier cream....

      Vaseline is also thick, not so easy to apply though....cotton pants are a must, nothing else.

       

    • linda94703
      linda94703 elle2424

      Posted

      I was doing well with just Estrace until I played Pickleball for 3hrs not knowing any better. My doc put me on Osphena and stopped the Estrace. No one educated me on moisturizing always everywhere, I am paying for ignorance..
  • dani8979
    dani8979 linda94703

    Posted

    LS is very hard work....must keep the genital area and towards anus, moist at all times. Steroid cream works....after you finished the treatment with steroid cream use a barrier cream or ointment....A lot of women use different things, some like to use coconut oil as a barrier or emu oil, others use Hydromol, like I do. I rinse with water mixed with bicarbonate of soda after every visit to the loo, I have spray bottle I carry around with me, when I have to walk around a lot I make sure I am well moisturized....I also have regularly local baths with bicarbonate of soda in it, for about 15 min.

    I do not use toilet paper, I massage the steroid cream very well on the genital area and toward the anus. I only wash with Hydromol  and never use shower gels, wash my hair separately and only take showers, no more soaking a long time in a bath.

    I am at menopause so, I use Estriol 0.1% cream which I insert into my vagina at night for three weeks and then I reduce it to twice a week.

    The friction, rubbing skin against skin at a deeper level is what needs to be avoided....

    Diet is important as LS is an autoimmune disease, cut sugar, wheat....eat lots of fruit and vegetables. Stress needs to be controlled, find way of relaxing, meditate, do yoga....

     

    • linda94703
      linda94703 dani8979

      Posted

      Are you using the Clob on the inside or outside. My doc said outside and between the pee and poo area...  Sounds like you have this calmed down....  I was dry and loaded with friction...  thank you dani..
    • dani8979
      dani8979 linda94703

      Posted

      The steroid cream I am using is Betnovate and Hydromol as a barrier and also wash with....Hydromol is thick and does not wash off easily....I rinse with bicarbonate of soda mixed into water after every visit to the loo.

      I get flares from time to time....castor oil and lavander oil also works well. I am about to give it a try to testosterone cream to help me with reversal of my fusion...will see if it works. I also take a lot of supplements....

    • linda94703
      linda94703 dani8979

      Posted

      Hi Dani, Are you using the Clob on the outside or inside? Also the Hydrolmol is used inside to block the urine? Please bear with me and thank you for any help. I am having burning when I urinate inside so looking for something to block and protect....
    • dani8979
      dani8979 linda94703

      Posted

      The burning will go away if you begin to use bicarbonate of soda after every visit to the loo, I apply the steroid cream after washing in the morning early and when I go out I will apply Hydromol all over, go deep to protect me from drying, any friction. You can reapply it during the day if you need to...I also apply steroid cream at night before going to bed, massage it well and go as deep as I can, stretching the skin, also apply towards the back passage as well. Use a surgical glove when applying the steroid to protect your skin on your hand.

      Diet is crucial, I do not eat sugar at all, wheat free, do not drink alcohol, eat lots of fruit and vegetables, lean meat and fish. Stress is a major trigger, so find ways to relax...I also take supplements and vitamins.

    • linda94703
      linda94703 dani8979

      Posted

      Hi Dani, how long have you been using the Clob 2x a day? I am trying to relax a little more but am now on Osphena for Estrogen and I think it adds to the worry. Right now I am not sure I have the right doc for me so working with all of you here who are seasoned with this mess..thx. 
    • dani8979
      dani8979 linda94703

      Posted

      I use it twice a day only when I have a flare....then slowly decrease it to only once at night, after that to three times a week once at nigh and then to just twice a week, twice a day or once a day depending how I feel. The steroid cream needs time to work....  Ditch the doctor if you are not happy, go to a vulva clinic. They know LS inside out....it is very important to have a good doctor you can go to and prescribes you the right treatment for you. 

      Estrogen is good in dealing with dryness inside the vagina and also goes outside, too. I use it....

      Steroid cream is not to be looked at as damaging....you are treating a skin illness, not a healthy one. For that area and for a limited time you are treating LS. As I said before, it is important to look at this from diet point of view, stress, chemicals and need to work on many levels to keep LS tamed.

    • linda94703
      linda94703 dani8979

      Posted

      I am going to get a referral to the University of Michigan. It has a Vulva clinic...hope it won’t take to long...thx Dani!!
  • Guppy007
    Guppy007 linda94703

    Posted

    Hi Linda, I think that if you are exercising every day for example then you are probably more likely to have problems down below.  I think if I wanted something to stay lubricated for a while then I would use vaseline as it sticks like glue and lasts far longer than say, coconut oil.  That said, you have to find out what works for you, I wouldn't use vaseline normally as it is hard to apply but it might work for exercising.

  • jane08222
    jane08222 linda94703

    Posted

    IT will get better. are you using a steroid morning and night? Usually 3 months, than weaning to what works for you. One of the big problems with most anything you use is it stains our pants....pads help with that but the chafing causes problems when active. There are various lubricants you can use....coconut oil, emu oil, or a product called vaginal lubricant mad by a company called YES that is very good. make sure to use a cleansing product that is very mild...like lubrigen that is over the counter. Flare ups happen, but once you figure out what works for you, you can deal with it......unfortunately....we don't have a choice.......

    • linda94703
      linda94703 jane08222

      Posted

      Hi Jane, I am still confused with how often I was to use the Clob, I think I am going to change docs...she is way to busy and I will not deal with the nurse practioner again. I am fused in the Vagina and she used a metal speculum on me...severe pain and bleeding, I have not recovered.   Still trying to figure out what will work, thank you Jane....
    • jane08222
      jane08222 linda94703

      Posted

      Linda, everyone is different, so it will be awhile before you figure out what works for you.   I would use the Clob 2x a day, moisturize in between, during the day.   Use a spray bottle with water (a few pinches of baking soda mixed in the water) EVERY time you pee.   Blot dry then apply a moisturizer.  Wear ONLY cotton undies and pants.   Winter and fall are better for me than Spring and Summer..more activity, more heat!  If things are fusing you will probably be on the Clobetesol for 3 to 6 months to calm and slow things down.   You can google and find a specialist.   I googled both GYN, LS and Dermatologist, LS and got a few.   Went to two before I found the one for me.   You will figure out what works for you...try not to get discouraged...we don't have a choice in this!  Try to cut sugar and wheat out of your diet as much as possible and stay WELL hydrated.   Sending you success!

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