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Lets Create A Database and Find Our Own Cure

Posted , 21 users are following.

paula92906
paula92906

I am frustrated. I don't feel doctors or pharrmaceutical companies are doing enough. It occurs to me that if we create a database of our experiences we can help eachother and possibly find a cure together. I am sick of putting strong pharmaceuticals on my body. Maybe there is something else. It's possible that there isn't but have we really compiled all the date from all the people to see what is working. 

Right now I am trying pure vitamin E oil on my labia. If it doesn't work, I can share that. If a few other people try it and it doesn't work, we can discard it as an option. We can track clobetasol, protopic and every other idea in the same way. Let's see if anything is actually working. 

If vitamin E doesn't work and I realize it probably won't, my next idea is pure aloe right from the plant. Unless we work together to systematically rule out options, I believe we'll never move beyond heavy duty pharmaceuticals. 

Is anyone interested in this idea? 

Paula

5 likes, 91 replies

91 Replies

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  • Emis_Moderator
    Emis_Moderator paula92906

    Posted

    The other discussion from last year along these lines is here

    https://patient.info/forums/discuss/ls-perhaps-we-could-compile-a-fact-sheet-270123

    I cannot really help with databases or the best way of collating info etc but if anyone wants to create an online survey such as survey monkey I can add a pinned discussion to it on the LS page like the New to LS discussion. 

    • paula92906
      paula92906 Emis_Moderator

      Posted

      Hi Emis,

      Thank you for the information about the previous group and about survey monkey. I looked at their conversations and I am going to look at survey monkey over the weekend. 

    • paula92906
      paula92906 Emis_Moderator

      Posted

      Hi Emis,

      I completed a survey on survey monkey. You said you can add it to pinned discussions. Let me know what to do or what information you need to get this survey out to as many people on these forums as possible. 

       

    • Emis_Moderator
      Emis_Moderator paula92906

      Posted

      Hi Paula,

      If you start a new discussion in the LS group with the link to the survey and any other info it will go for moderation. When I approve it I can pin it then.

      Regards,

      ​Alan

    • lizziewizzie
      lizziewizzie Emis_Moderator

      Posted

      Very helpful. Quick look through tubal ligation and other things i wouldn't have thought about.

      Also looks like a GP has commented too. Thanks!

  • justine89448
    justine89448 paula92906

    Posted

    I forgot to say I've had precancerous cells twice on my cervix and when I have a smear it always comes up servere inflammation I ask my gynie what that means and she says could be caused by anything personally I think it's linked
    • Chrisy
      Chrisy justine89448

      Posted

      I had two abnormal smears and two colposcopies to diagnose problems.  Had a hysterectomy as I couldn't stand the worry.  I also had endometriosis so I was just glad to get rid of the period problems as well.  It was after that I had my first severe flare up.  At first because I was so inflamed the Doctor missed my Ls but I persisted and went back to the GP and a new one diagnosed the ls. I know now that I probably had this Ls from my twenties mildly.  Often tearing and sore after sex.   I know that abnormal smear tests are definately a sign of Ls as when I was diagnosed the specialist told me that it was probably why I had the abnormal smears.  I have read this before on another site as well.
    • dani2590
      dani2590 Chrisy

      Posted

      Hi Chrisy,

      I was interested when reading your post you mentioned a connection to the abnormal Pap smears and LS. I've seen a few posts about this. I was always under the impression that LS is an external problem and that the vagina and cervix are spared. I guess I'm worried now that my cervix and vagina are affected too somehow.

    • Chrisy
      Chrisy dani2590

      Posted

      Hi Dani,  I worry about this too but I am assured that I no longer need internal exams.  I think it would be too painful anyway now.   I would be interested to hear if anyone knows of any problems with vaginas and ls.
    • kskms14
      kskms14 Chrisy

      Posted

      Hi Chrisy,  sclerosis means hardening, thickening &/or increasing of the connective tissue.  In short, the vagina can go through changes.  I was diagnosed 20 years ago. The dermatologist told me LS would settle down and be like I never had it.  I get an occasional sore spot, but my vagina has almost completely closed. the opening feels like a hard rubber ring. I have vaginal stenosis, the whole thing is hardened and closed.  In the beginning, I tried the dilators, but the creams burned too much.  
    • Chrisy
      Chrisy kskms14

      Posted

      Thanks,  I am nearly the same now, so unable to have sex for years. Hubby doesn't mind as he has his own issues.  I hope you are right about the ls settling down.  Thanks for that hope.

       

  • paula92906
    paula92906

    Posted

    I found the following article interesting especially the part I copy pasted below the link.

    https://patient.info/doctor/lichen-sclerosus-pro

    Extragenital LS

    Shave excision and CO2 laser have been used successfully, treating symptoms and appearance.[9] UVA-1 is the most successful phototherapy for LS.

    Is anyone getting this laser therapy for lichen sclerosus? I wonder why it isn't suggested for the genitals. Could it do more damage than lichen sclerosus and clobetasol already do?  

    • hanny32508
      hanny32508 paula92906

      Posted

      My fear is that any form of 'cutting' won't be beneficial.  Better to search for other methods that don't sound so drastic, is my thinking.  Big improvements over longer periods of time I had with baking soda and coconut oil.  Plus alkaline diet.  
    • paula92906
      paula92906 hanny32508

      Posted

      Thank you for your comment. I didn't realize cutting was involved in this type of therapy. I thought it was superficial like laser hair removal or something like that. 
    • lizziewizzie
      lizziewizzie paula92906

      Posted

      THANK YOU FOR THAT PAULA. ITS STIMULATED ME TO REPLY TO THE LINK :

      I'm primarily a patient but also a health professional. Am reading from both perspectives and appreciate the invitation to offer feedback.

      Am wishing to strongly disagree with the statement that autoantibodies tests are not indicated. I have seen patients insist on these and by addressing lifestyle factors eg diet and allergies - actually reverse their conditions. (With attention to other factors, in addition, in some instances).

      I also have a low thyroid. My TSH had been 5.00. (Normal accepted as being 0.5 - 2.00).

      HOWEVER  from past test results I see that I had raised autoantibodies over a year ago and prior to raised TSH manifesting. I was not notified of this and believe that the progression of thyroid disease could have been halted earlier with prior notice had I been made aware of this issue.

      I am seeking to ensure that patients who ask for autoantibody testing - because they are motivated to address the lifestyle factors - receive the benefit of repeat testing. I was refused and am frustrated and resentful about this. It is the best indicator of change and improvement.

      Trusting this is of help.

      If feedback is possible can your physician advise of autoantibodies that might be expected with Lichen Sclerosus? I mean beyond TPOab and TGab relevant to the thyroid.

      With thanks

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