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Not a coconut oil,day!

Posted , 4 users are following.

Sus28
Sus28

Is winter here?

it sure is very cold  here today.

9My coconut oil is not melting as I put it on!!!

Could be a problem?

1 like, 109 replies

109 Replies

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  • lee12629
    lee12629 Sus28

    Posted

    Im trying somthing new for rinsing daily or after urinateing..i bought a bottled water..thats high alkaline and i believe to be totally chlorine free.I think chlorine might be very irritateing to most of us as our skin is so delicate.Water name starts with an F,will post if this helps the skin after i use it awhile.Most of our water systems in the US have Clorine etc.Just an idea.By the way water can be very acidic..drinking water..somthing i didnt used to know.
    • chris00938
      chris00938 lee12629

      Posted

      You know what would be useful on this site - the ability to do a sort of poll where there was a chart where we could fill in degree of atrophy (symptoms), what we'd tried and for how long, side effects, and what the results were.  It would be easier to see at a glance how effective (or ineffective) the treatments were.
    • chris00938
      chris00938 lee12629

      Posted

      Right, we'll ask for one.  Then if we chat about what we want on it before it goes up, we can include everything?  I'll ask now:-)
    • chris00938
      chris00938

      Posted

      Couldn't see how to contact the moderator to ask so added a link that wasn't relevant to catch his eye.
    • Emis_Moderator
      Emis_Moderator chris00938

      Posted

      Hi Chris,

      It worked  smile

      Re the survey in the LS group here

      https://patient.info/forums/discuss/lichen-sclerosus-survey-results-449532

      a user joined surveymonkey and created the questionnaire which was then posted as a link for users to complete. We do not have the capability of creating surveys on behalf of users but if someone created one using that site or something similar it could be put up like the LS one. I don't know much about the site or creating surveys there but think it is free for a limited survey.

      Regards,

      Alan

    • Sus28
      Sus28 lee12629

      Posted

      I am a very keen swimmer and find it hard to avoid chlorine on my skin.

      have to shower immediately after a swim

    • chris00938
      chris00938

      Posted

      Right - see Alan's reply below.  I've joined Survey Monkey so does anyone have any specific questions?  I'm thinking of a) how bad is atrophy - symptoms, and b) what has been tried and how long for, and c) did it improve or get worse.  I don't know if I'll be able to format it in this way though because I've not done anything like this before, so if anyone has more experience or thinks they can do it easier than I can I will be perfectly happy for them to do it LOL!  Otherwise I am fumbling my way through:-)  Another thought - does anyone want d) age added to it as another question?
    • chris00938
      chris00938 Sus28

      Posted

      I'd imagine that chlorine wouldn't be the best thing for VA, so all I can think of there is to use something to try and seal the skin first (maybe back to Hydromol around the outside), but that's a bit specialised!  But swimming is so good for the body in other ways.
    • Sus28
      Sus28 chris00938

      Posted

      I put Vaseline on there to swim If things are bad.
    • beverly52803
      beverly52803 chris00938

      Posted

      chris, great idea! I admire your determination! Why not go back through threads (if you can?) and look for symptoms and possible solutions. What comes to mind for me: at what age did it begin, how long, progressing or static, hormones or not, doctor's advice, any procedures, supplements, topicals, what makes it worse/better, diet, abilty/disability to have sex, further complications if progressing, genetic component, mona lisa treatment. Obviously you'd have to make sense of all that. Good luck!
    • beverly52803
      beverly52803 Sus28

      Posted

      sus, when I had an infection (but was being treated with the wrong antbiotics and for AV, etc) I was told to avoid chlorine. Everything bothered d me so it was impossible to determine what made it better or worse, but it stands to reason chlorine would irritate any sensitivity.
    • chris00938
      chris00938 beverly52803

      Posted

      Thanks Beverly.  I've just made a note of all that, so I thought I'd leave it another day or so in case anyone else has any more input and then try getting it on survey monkey where I've begun the process :-)))
    • beverly52803
      beverly52803 Sus28

      Posted

      Sus, we are getting old and drying up like prunes! I got goggles to use in the pool as I thought I'd go blind from the burning.
    • chris00938
      chris00938 beverly52803

      Posted

      So far these are the questions I've got to list on survey monkey but just wanted to make sure no-one has anything else they'd like me to include - last chance now:-)?:

      what age did it begin, symptoms, how long have you had it, is it getting worse, or staying the same, are you taking hormones of any sort and if so, what (systemic or local and if local, cream, tablet pessaries or what) what foods or drinks make it better or worse, ability to have sex, further complications, genetic component, mona lisa treatment, side effects from treatments how long have you been using treatments, and how effective would you say they are.....

    • chris00938
      chris00938

      Posted

      Sorry - tried to do the survey on survey monkey but it's beyond me!  I've spent ages trying to find a way of getting a second question up and I' not getting anywhere at all.  If anyone knows of a simpler survey site, I'll have a go but survey monkey has made a monkey of me:-))))
    • chris00938
      chris00938 Sus28

      Posted

      I've tried a few other sites but still struggled.  I'm playing about on Word now to see if something can be done on there to then put somewhere else.  The difficulty is, it's no good me just doing a list of questions because then we don't know what 'remedies' apply to what degrees of atrophy etc. - I need to do it in some sort of table, so that it can be seen how long someone has had it at the same time as what worked for them.  But if anyone has any ideas do feel free to say!
    • chris00938
      chris00938

      Posted

      Well, I've officially given up trying to do the survey.  I managed to get a table on to Word - that bit was fine, but then when I went to put it on the site that had told me I could use Word it was telling me I had to upgrade and do all sorts, and not knowing if I'd even be able to enter it all then, it didn't seem worth pursuing.  Sorry folks!
    • beverly52803
      beverly52803 chris00938

      Posted

      Oh no!! You were about to become my technology heroine :-(

      Would you reconsider giving the You Tube  monkey tutorial a trial in a few days?

    • chris00938
      chris00938 beverly52803

      Posted

      The problem is, if it's not done as a chart, then you can't really see at a glance what treatments are successful and what aren't for various people, so doing a list of questions isn't going to help.  I could manage a list of questions, but it didn't show up what worked, if you see what I mean.  Then I found somewhere where they said I could download Word, so figured out how to do it on Word, but then when I tried to download it the site said I had to upgrade and it all got more complicated.  But do you fancy having a go?:-)))))  I can even send you the Word document, if that helps?:-)  Or any other volunteers???:-)))))
    • chris00938
      chris00938 lee12629

      Posted

      Thanks Lee.  It's a bit frustrating, but I decided life is too short LOL!
    • beverly52803
      beverly52803 chris00938

      Posted

      I am trying to deal with a new computer and an updated phone. In other words I am about to loose my mind as it is. Don't give up yet. There has to be a way of compiling this info. Maybe Alan (who is reading this...right?) can make a suggestion??
    • chris00938
      chris00938 beverly52803

      Posted

      Alan's suggestion was Survey Monkey.  But I hope you can get to grips with the computer and phone!:-))))
    • beverly52803
      beverly52803 chris00938

      Posted

      I will try to check out the Monkey, but it's not high on the priority list.

      The touchpad on the computer has been disabled (thank the Lord...now I can finally type a sentence), but I'm way, way behind on the phone...and life in general! I'm thinking inabilty to get organized is another post menopausal symptom. Seriously.. I knew women who claimed without their estrogen they could not think clearly!

    • chris00938
      chris00938 beverly52803

      Posted

      Oh this stuff is so time consuming, isn't it.  I know the feeling:-))))  I'm off to get ears suctioned out today and then shop, and looking forward to getting out:-))))  You'll be so proud of yourself when you've sussed out all that technical stuff:-)))
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