Lets Create A Database and Find Our Own Cure

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

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.  

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

Great idea! Maybe we should all fill in a questionnaire type thing??

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

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. 

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...

 

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

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.