Baking Soda and LS

More than one good thought, Sue.  Thanks,  that's very helpful.  I think I remember that soda was used for cleaning purposes, together with sand.  

I have no scientific background and thank you for the bicarb explanation.   Baking soda then is an innocent little helper.  

Hi Lyn,

It is good to ask questions.  

To answer your question:  I have Lichen Planus in my mouth and Lichen Sclerosis 'at the bottom'.  

I would really not know why my LS is so fast and vicious.  My doctors don't know either.  The same treatment has been followed as for everybody else.  

However, at the moment the LS is calm.  I call that a blessing.

If only through possible research we could learn at least about these variable details.  

Hi Hanny--I was wondering if you could tell me more about the progression of your more aggressive LS. I'm noticing that my symptoms seem to be progressing pretty fast, too.  I just began having any symptoms this year, and recently I'm noticing fusing occurring over my clitorus (it has been chronically sore for a few weeks) and white areas still on my inner vulva.  I've been on the clob ointment for two or three months now (daily) and it has not gone into remission, even with a quite strict autoimmune paleo diet (though did have too much watermelon for a while this summer and I occasionally have potatoes).  I thought that it was improving, but a look today reveals that it has actually been worsening. I can see how the whole inside the vulva area could begin to fuse if it keeps progressing so quickly.  Can you tell me how quickly yours progressed and what has helped (for example, I know that you thought that antibiotics settled things down a bit for you)?  Thanks!  --Suzanne 

Hi Suzanne,

Though I went through this LS process rather quickly, I still can't call myself an expert.  In other words, LS remains a mystery to me.  

Me too, I have been trying to find 'a cure' in diet, CMO, coconut oil, emu-oil, premarin, bi-est and testosterone combo.  All worked for a while and then I had to find something else to make things comfortable.  There is obviously something we don't know.

The main ingredient that keeps things under control has still been clobetasol.  Take out sugar, stay away from stress. Don't do anything that ruptures.  What helps me at the moment is to try to not eat anything after the evening meal, being the most effective from 7pm on, till breakfast in the morning.  

With a very serious flair up accidently the anti-biotics that were given at the time stopped LS in its tracks, so to speak.  But this can not be done too often. However, seems helpful as a last resort.

I have been puzzling over what else I could have done.  Since the fastest fusing takes place at night -  Is there a material that could be placed in between the layers of vulva still in existence while sleeping?   Something that works to prevent layers touching each other.

What I do think to know is that this illness needs to be caught in its earliest state.  Not when things are already fusing together.  But by saying that, most of us here are not helped.  

The speed with which the biggest fusing happened was literrally overnight.  All had let loose, at the time I thought I was 'cured' to discover that the next morning all had sealed shut permanently.  All I could still do after that was urinate.  And the rest of the story I think you already know - my latest flare up (most likely set on by stress)  left only a pinhole to pass urine through.  And that's when I got into action and so did the doctors.  I became an urgent case in the hospital.

The dilation is a bit of a challenge.  I hope that I will be able to keep this opening open.  Again the same thought applies:  What will keep it open at night?  

So I 'wear a condom' that is having good lubrication, in there goes a small birthday candle to dilate.  I was told that this was next after healing was done.  But I started a bit earlier, otherwise healing would never happen.  The opposite sites wanted to grow together.  There's my solution for keeping things seperated.  

More questions?  Keep asking.

Perhaps this gives again some other thoughts about what could be done.   

  

Thanks for providing details, Hanny.  Sounds like it all happened so quickly--I'm in shock!  Did they "unbury" your labia and urethra in the dilation, or did they have to create a whole new opening due to the fusing?  Sounds intense what you have to do at night to keep things open--and with hope that this goes into some kind of remission. It's all so mysterious why LS can occur and why it can become so aggressive. 

I'm considering for the next step to do a fecal microbiota transplant (FMT) to get a better microbiome, as it is my understanding that poor gut diversity may be related to the triggers for these autoimmune issues. I'm that desperate not to keep waiting.  I've done virtually everything else that usually works to create health for most people (whole foods diet, supplements, hormones, exercise, emotional work, etc.) and for some reason it just doesn't do the trick for me.  I've spent my recent years researching the topic of creating health and making changes--changes that work for others--and while I am somewhat better, I am not healthy.  After years of celiac disease and antibiotics, I believe that my poor microbiome is a mess, and all of these autoimmune issues are a consequence.  

It's frightening to me how little control I feel that I'm having over the LS, and since I have the bloodwork for other autoimmune disorders too (including CREST syndrome, which is significantly worse than LS), I need to do something to see if I can impact the progression of all of these. I'm waiting for some testing that I did recently (for parasites, leaky gut, and neural antibodies, etc.) and then I think that I might do this experiment with FMT.  

How long do you think that you'll need to keep up the nightly procedures to keep things open?  I like that idea of a fast after the evening meal and I've read that can really be helpful to the immune system and to blood sugar regulation too, which could be a factor in all of this.  I may try that, along with trying to change my late-night ways.  BTW, I think that I did catch this in the early stages, but I don't think that it made a difference to the progression, because the clob doesn't seem to be slowing this down for me very much, as far as I can tell.  I'm still waiting to get the relief that most people get pretty quickly with the clob.  Thanks for writing!  --Suzanne

You put it well:  It remains a struggle.  That sums it all up, doesn't it.  

I suspect that to keep all open I will have to go at it 'forever'.  

At the end of this week another doctor's visit - we'll what he has to say.  

Hanny, wow...forever.  I hope that you can heal up before then.  If not, I hope that you can find a good routine to keep everything from re-fusing.      

      --Suzanne

I am so grateful for this kind of detail as it really helps me undertand just how quickly this thing can move. Thank you so much. 

Can you explain a bit further...cavilon?

Google : cavilon-no-sting-barrier-film

am also trying to remember, as an alternative, the name of a modern wound protector that forms a skin...just thinking you could maybe keep the labia separate on either side with different pieces of this 'fibre net' with packing in between.