LS progressing :0(

Hanny, I'm so happy for you – after that awful period you lived through, you deserve this. Everyone's 'architecture' is different and yours allowed for fusing and reversal. Mine is smooth skin with the slightest indication that there was once a seam. I have zero hope that this can reverse.

I did happen to get taken to Costco the other day and bought a huge jar (over two litres) of organic coconut oil for $26. So that's my new all-purpose moisturizer/barrier. I've been buying my neighbour's tiny jars of homemade creams at great expense.

 

Thank you Hanny, your words were encouraging. It does help to hear how others handle their LS. Just helps knowing I'm not alone in this.

I'm not sure I 'deserve' the reversal.  But thanks anyway, Morrell.  Just wanted all to know that although at times it doesn't seem possible to put things in reverse, I find it hard to believe that I was simply lucky and an exception to the rule.

My skin looked smooth as well, as if nothing else had ever been there.  (can you remember that we talked about 'barby doll bottoms?)(ha) (you need a sense of humour)  Till at some point I noticed a thin line reappear.  I had never expected this to happen.  But what a bonus - even the clitoris.  At present it's the seam above that.  And the pain and discomfort is identical as what I experienced before, while in reverse.  At the time I thought it was because of the extreme heat we get in Summer.  What did I know about LS then.  

The best purchase -  I'm almost at the bottom of my Costco jar.  It helps my LP as well.  Takes time again, but also there is a difference.  I rinse with coconut oil so now and then.  Most of the gums start to look pretty healthy.

I am new to this forum but so grateful for all the help and reassurance I have been given reading your comments. I am on third month of clobatasol treatment and using

Emuaid and Vaseline to keep moisturised and sudocrem if going out as a barrier cream all have been great. I read a lot about coconut oil but when I go on a website I don't know which to use as so many kinds and also all used for cooking !?!?. I also would like a link to Dr Goldstein website so I can listen to his talk and try to understand why this is happening. I live in Scotland and my GP is not familiar with LS and I feel isolated but my sanity saved with this forum. I do struggle emotionally with this as well as physically but my LS seems quite controlled although I get a bit uncomfortable at times since only putting clobatasol on twice a week. Can you help with above.

Thank you.

Glad you've found us, Lottie. Here's the discussion where you'll find the link to Dr. G.

https://patient.info/forums/discuss/dr-goldstein-lecture-271556

Organic coconut oil for cooking is solid like shortening. I just bought some and haven't tried it yet, but am optimistic.

Lottie, Can you not ask your GP to be referred to a specialist, someone who is knowledgeable with Lichen Schlerosus, because quite honestly your GP is not unique, many doctors are unsure of how to treat this condition, which makes me nervous, as bad advice can cause irreparable damage. I buy my coconut oil  online, it looks like a tube of white lard, and melts depending on the temperature, most health shops should have it, but it is cheaper online for sure, I will PM you where I get mine from, and the name of it.

Hi, dear Hanny!

Could you please tell more about the hormonal replacement you take (or took)? And for how long?

Thank you.

Hi Lottie,  I see that Morrell has already given the link to Dr. Goldstein.  About the coconut oil - I have bought several.  And yes, it's all sold as something you use for cooking.  Looks like a lard.  All have labels on them that say 'cold pressed' 'biological' and such.  I have not noticed any big difference between them other than the price.  

Hi Maria,

Early on I got to use Premarin via my early visits to my gyno. (At the time I was almost entirely 'zipped up'.)  It was needed to make the skin flexible, I was told.  And this then was to make the dilation procedure possible.  After that I stopped this kind of hormone replacement, because it caused swelling.  Which then almost closed up the dilated area again. (dilation was provided so I could urinate again) Therefore I went back to what my nature path had prescribed earlier. (and my gyna was okay with that as well) (having observed the swelling by Premarin)  This hormone replacement is called Bi-Est and compares better with our natural hormones.  I have to take a drop of that daily and insert in the vagina opening every morning.  In the evening I take Progesterone.

Since I have no female organs left (hysterectomy) and my adrenals malfunction wherefore these organs do not produce the required hormones for menopause transition, it has helped me in a variety of ways.  One of the differences is that I have some strength back and can do yardwork again, lift a suitcase and such.  All affect apparently more than one part of the human body.  

Hope this answers your question.   

Thank you so much for your answer. That is exactly what i wanted to know.

I think the hormonal replacement plays a huge role in reducing the LS symptoms and the reversal... no? 

Anyways I am very happy for you.

Kind regards.

I think Maria, that it is a combination of things that controls the LS.  Not just one thing.  

It does give me hope. Thank you.

Welcome.