LS - alternative and otherwise

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Thanks all for your amazing updating and progress reports.  

Its useful to  keep track and self monitor with photos, if possible - I do it every 6-10 months. 

My imagination (more like nightmares) is worse than reality.  

Recently, I suffered from burning, itching especially peeing and imagined the closing up of the opening. I finally took photos of it + much to my relief, it was just one or two spots of the vaginal skin that was raw and open.

Just the relief and defining the scope of the problem alone alleviated the stress.  Managing stress + being knowledgeable as best as possible help us with self empowerment and caring for our respective condition.  Thank you all for being so responsive with such relevant and useful information. 

2 likes, 19 replies

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19 Replies

  • Posted

    I think you're describing an experience many of us have had. I'm finding that I can now notice subtle changes in my vulva (both in what I see in the shaving mirror and how it feels) which always go along with something bothering me emotionally. Somehow the realization that this has happened allows me to pay some attention to whatever was quietly bugging me and do an extra night of clobetasol. Next day it's better.
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    • Posted

      I am glad that I have found this site.. I was just diagnosed with LS and was totally lost and scare.. Thanks you all to show me that it is a hard condition... but we can mange it..
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    • Posted

      Hi there, sorry you have LS but glad you found us. You bet we can manage it. Do have a look at the 'New to LS – start here' discussion. There's plenty you can do right away. The precription works, but quite gradually. It may be six months before you notice a major improvement. We need to use the steroid ointment in order to prevent worse, but we've been sharing a whole bunch of things that make a difference quickly, like cutting back on sugar, managing anxiety, and using lots of oily moisturisers, but no soap.

      You might like to start a new discussion with some of your experience. Plenty of regulars here, we help each other with something most people don't want to hear about.

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  • Posted

    so glad things seem to be within your control and that you're feeling positive. thanks for the reminder to take photos!

    very best wishes to you xx

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  • Posted

    Thanks for your encouragement.  Yes, keeping a good record has proven to be very helpful to me as well.  So soon one forgets the previous state.  I also bring it with me to my doctor's visits.  After all, these people only get to see a brief moment in the development.  They can use a little help as well.

     

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  • Posted

    Hi everyone, I'm new to this whole LS thing and I'm so scared. I'm just wondering what creams you find effective. I am using Lyderm but it doesn't help much. Any advice will help.. I live in a remote place so dealing with it has been hard especially with inadequate health care 
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    • Posted

      You probably have baking soda at the house.  I use a warm water rinse after every bathroom visit with three to four pinches of baking soda added.  Then I rub in coconut oil for lubrication and other healing.  I find this a very helpful and soothing combination.  

      At present I use very little of the globetasol.  Only once a week.  And that in a very small amount.  

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    • Posted

      Hi Hillary, so sorry you've had to join our ranks, but you came to the right place. Your prescription is yet another in the list of ultra-potent topical steroid creams. Most of us are prescribed Dermovate which is Clobetasol Propionate .05%. Yours is fluocinonide .05% – same thing.

      I've had LS my whole adult life (I'm 62) and was only diagnosed a bit over a year ago. The prescription took a good six months to kick in, but it did eventually drive the inflammation down to a maintenance level where I use a tiny smidgen twice a week. It's essential for keeping the general progress at bay, but on this forum we've been sharing many other other things we can do as well that work quickly to prevent flares and slow down the progress. We have crappy skin that's very vulnerable to yeast and bacteria; to urine, feces and sperm; to soaps and chemicals. For this, anything oily that has the consistency of vaseline provides a barrier to irritants and prevents drying and sticking (raw skin is sticky and wants to fuse with the raw skin on the opposite side). The friction of sex during a flare up only makes it worse.

      We have an inflammatory response to anxiety and sugar in all its forms (not that every molecule needs cutting out, but stopping the big doses helps fast). I discovered that cutting coffee firmed up my chronically loose BMs which healed the LS skin around my anus very quickly.

      Hanny's baking soda first aid hint works for me – I put 1/3 of a cup in my soaking bath on clobetasol nights. As with the prescription ointment, more is not better.

      Do watch the hugely informative presentation by Dr. Goldstein we have included in the "New to LS – start here" discussion pinned at the top of this forum:

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

      And hang around. We all appreciate having others to talk to about this invisible pain-in-the-butt ailment.

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    • Posted

      Hi Hanny...I was just wondering about the globetasol being taking as longlife treatment.. Do you have any information on how long a person can go taking steroids?  
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    • Posted

      I honestly don't know.  Personally I hope that I can gradually phase it out.  The lesser I need of the Clob, the better it will be.  I hope that LS can be 'phased out'.

      There is a lot of new research going on on auto immune diseases.  More and more knowledge and better understanding comes out of that.   

      Just hoping.

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    • Posted

      'Taking steroids' isn't one Thing. I avoided steroid creams for my psoriasis for about twelve years after using them for thirty years. It didn't go well. My skin was a mess for those years. I have no other health issues to make me wonder whether the steroids caused them. When after my long-delayed LS diagnosis I realized I'd be stuck with clobetasol for the duration, I accepted it as the lesser of two evils.

      My mother took oral prednisone for thirty or forty years and other heavy anti-inflammatory drugs since then. She got debilitating rheumatoid arthritis at age forty and had no choice. So, she's had flare-ups where the dose was high enough to give her the classic moon face. She's had various other health problems that may be from side effects. But she's 87, still walking, with 100% of her mental acuity. I see her as the worst case scenario for using steroids.

      Our tiny smidgen of steroid ointment on a few square inches of skin does not begin to compare to taking oral steroids.

      LS is as yet unexplained. As Dr. Goldstein says, clobetasol is kind of a shotgun when we need research to find us a rifle, but we're not there yet. Disfiguring scarring can happen very quickly if the inflammation is allowed to run wild. Constant open wounds invite squamous cell carcinoma of the vulva. So, I'm happy that the two tiny bits of clob a week I'm using has my undercarriage in a calm state, no open wounds, no raw flesh. I give a lot of credit to all the other things I've learned in this forum, but when Thursday night rolls around and the tingle has been happening for a day or so, I'm not thinking twice.

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    • Posted

      Thanks Again Morrell..I am sooo glad that I found this site!!!!! you won't believe how much!. 
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    • Posted

      I'm glad you found it, too. I sure get a lot from it myself. I've forgotten what it was like, watching TV, having to stand up every few minutes to pull my pants out of my crotch. Squirm, squirm.
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    • Posted

      Do you find that you have a better controle now then back then after you have initiated your treatment?
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    • Posted

      Oh, for sure! LS doesn't make me uncomfortable at all these days. I think 50% of that is from not trying to have sex. 25% is clob and 25% is the other good things we do.
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    • Posted

      Oh that is encouraging.. I have been so scared looking on some pictures at the internet.. and even though I don't have big symptoms...yet..I know that a lot is still to come.. but it is good to know that good treatment, and the "other good things, would be able to help...
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    • Posted

      You may never have those horrible symtoms, now that you're on top of it. And you may have a mild, slow-moving type of LS.
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