Lets Create A Database and Find Our Own Cure

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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

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  • Posted

    most def Paula...I use coconut oil...seems to have helped me. I also use baking soda wash whenever I can.
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  • Posted

    A data base is an excellent idea Paula.  LS is an inflammatory disease.  It is genetic.  When I was diagnosed over ten years ago, my dermatologist told me it was linked to three genes.  She also said, regarding the pain and lesions that it would settle down and I'd feel like I didn't have it at all.  She was right, but the damage is done.  In my case almost complete vaginal stenosis, (it is almost closed). I get an occasional sore spot.

    They have learned much more about this disease since then, but still not

    near enough.  

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  • Posted

    I did try to start some data gathering last year, but after compiling a load of questions, I rather ran out of steam.  However, it may be of some use to you.  The problem I can forsee is that we really don't know what each one of us is suffering from.  For instance, I have had 4 biopsies, all of which came back as negative for LS, but I am still suffering the same way as many others report on this forum.  I asked and got a second opinion (a good gynacologist) who took one look and said "that is Lichen Sclerosis".  For what it's worth, the best strategies I use are sodium bicarb washes, after using the toilet (I can't always manage this, but certainly a good wash in bicarb night and morning really helps) plus coconut oil or Double Base cream (basically fatty cream - colourless and odourless).  Also, I apply Dermovate (Clobestasol) ointment (do not accept the cream because it does not work as well).  Hope this may be of some help, lots of love Margaret
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    • Posted

      I use the Dermovate less than once per week at the moment, because I am not flaring up, but will up this to night and morning if things get bad.
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    • Posted

      Interesting to read the cream doesn't work as well as ointment. I had the ointment and this last time I picked up my prescription it was cream. Curious to see what happens.

      My doctor diagnosed me without doing a biopsy at all. I suppose we could also post what our specific symptoms are.

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  • Posted

    Im currently using clobetasol and elidel. I was originally prescribed clobetasol and Protopic but I'm allergic to erythromycin and not supposed to use it. I accidentally still did and had an allergic reaction, horrible experience. Elidel was prescribed in place of Protopic. I only have to use both as needed not all the time. My doc wanted me on clobetasol for two weeks on one off but I haven't had to do that. Just start using it again when there is a flare up.

    That being said, yes something should be documented. I'm convinced my use of the IUD Mierena and/or my tubal ligation surgery set off my condition. No one I'm aware of in my family has it. I also have insufficient breast tissue so maybe it's a hormonal thing in me. Don't know and my doctors are clueless other than providing me with clob/elidel

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  • Posted

    Everyone's replies are very interesting. Benetta said she used the minena iud. I did too. She had a tubal ligation and I had a hysterectomy. These are the pieces we can put together with a database. Of course two people having an experience don't equal data but all of this is a start. I am going to look into online databases over the weekend if I have time. I am not an expert in databases so if anyone knows of some good ones online for tracking information, let me know. 
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  • Posted

    Iwould like to hear everyone's stories with details like:

    your age

    when symptoms began 

    the medical fiasco involved in finding your diagnosis

    your detailed symptoms

    what you've tried and the result, both prescribed and self treatment

    your partner's (spouse) views, opinions, frustrations, etc

    anything else you find pertinent

    Bringing the whole picture to light and getting it published would be instrumental in getting the attention of the research arena of the medical profession.

    This is a miserable disease and most unknown because it is "delicate" in nature and humiliating or embarrasing to discuss.  

    Just my thoughts...

     

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  • Posted

    Hi Paula, well done for thinking of this. I have been suffering for 3 years with Ls and Vulvodynia. I have tried Amptriptaline tablets and gabapentin tablets, the latter cause many problems including colitus. The steroid cream helped but made me very sore and tender, the skin would rip when I wiped my self after urinating. I found using cream with zinc helped to heal my skin, I applied it every time I urinated. Also I am taking Zinc with copper tablets as zinc helps the healing process.

    I went on holiday to Devon for a week and all my symptoms cleared, couldnt believe it, it was heavenly. On returning home it all came back with a vengance, after some working out I found the only thing different was the water.  There is no flouride in the water in Devon, but there is in Birmingham where I live.I had a water filter jug and a water filter fitted in my kitchen and also bought bottled water.  Things have improved dramaticaly I did have a slight relapse so I put steroid cream on for a day and changed the filter in the jug and under the sink and it seems to have done the trick. If everybody kept a food diary to see if it is an allergy causing theirs it might help, I am convinced mine is water, I have even got my Daughter to have a water filter fitted for when I visit her. I do not drink carbonated drinks, I had a sip of my husbands coke  to take some tablets and I was in great discomfort.

    Please let me know if any of you try bottled water for drinking, cooking etc  and it helps

    Best wishes

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  • Posted

    My experience is that things that work for a long period of time start to loose there grip and you have to figure out whether there is something else that works for you.  

    My 'staples' still are:  Baking soda baths and rinses, coconut oil, globetasol (for when it really gets bad)  

    Experimenting with new items but not sure yet what 'does the trick'.  I can still not say that 'I have found a permanent cure".  It is more a constant maintenance and diligent looking after LS.  

    Diet seems to make a difference.  My intestines fair well with it.  

    Stress is still a major trigger.  So is sugar, alcohol, gluten, cheese.  

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