Any help gratefully accepted.

Hi Jan, I am am Male with LS and I thought I would just pass on some of my comments before some of the wonderful Ladies on here will no doubt respond to you .....

Essentially, the key is to prevent flare ups and, as far as possible prevent skin from fusing together. This means getting your individual treatment regime in place as soon as possible - a one that works for you - and often this means trial and error and trying different things. You know about diet and LS being an autoimmune condition? Sugar and processed foods need to be eliminated as far as possible and look up suitable foods for autoimmune conditions on the internet, going gluten free can also greatly help too.

It may seem obvious, but applying any steroid, such as the Betnovate will only be effective if you apply it sufficiently often to all the infected skin areas and by rubbing it well into the skin. You should also get into the habit of gently stretching your skin. Keep soaps, shower gel and hair shampoo away from your entire groinal region as far as possible - thoroughly rinse to ensure all traces of cleansers are removed from the area. Ensure you are nice and dry down there, and if you have damaged skin, pat dry with a towel rather than rubbing backwards and forwards.

I prefer not to use too many things in the genital region to deal with LS as you can create a situation where one thing you apply is trying to out-do something else you are using. Until you get your dietary regime right, I would suggest you use the Betnovate as directed (never simply stop using it until you notice things getting worse) and maybe one other thing that you apply. This could be a plant based extract, such as Coconut Oil or Aloe Vera Gel - other ladies may suggest Emu Oil or Emuaid, or other items to try. Unless you get adverse reactions, try each item for around 3 or 4 weeks at least rather than for a few days.

I have just started using a mix of 2 tablespoons of Aloe Vera gel mixed with 4 to 6 drops of Turmeric Essential Oil and this keeps my entire genital skin moisturised and it has meant that I have been able to reduce the frequency of application of Clobetasol, which is one of the most powerful Steroid ointments that I had been using for almost 8 years, typically applied every other day.

Other Ladies will suggest ways of bathing to help your skin - I have not tried these so I will leave this to the Ladies to describe to you ..... Best of Luck ......

In addition I would add....

wear ONLY white 100%cotton underwear, change 2x daily.No soap, shampoo drippings on the vaginal area. Use gentle special cleaners only on the vagina. Get a medical hygiene bottle and flush the area after urinating. Apply a barrier, I use Emuaid, every time you void.

Use no dryer sheets, I use wool balls in the dryer. Use a detergent used for babies to wash your clothing, towels, etc.

You could try a gluten free, dairy free diet, add magnesium and vitamin D daily.

The key is finding what works for you!

Hi Jan - yes, it is a shock isn't it? Last year this time I was so shocked I stopped everything and spent 3 days and nights researching every which way. I found this site and read back at least 6 years. Then I started in on which are the cofactors of Vitamin D3 as that is what kept coming up for any autoimmune disease.

The link below is the result of that - and yes, i do take all the supplements that I can afford and trade off when I run out of one or another. Bottom line is we have to teach our own physicians about LS. Do get your Vitamin D level checked and magnesium and even have your thyroid checked INCLUDING something called the TPO test (do we have antibodies against our thyroid).

https://patient.info/forums/discuss/pathway-into-and-out-of-autoimmune-diseases--661033

Jan- So sorry you hv joined our ranks. I was diagnosed in JUNE, but had to wait 6 weeks to see my DR to get a steroid prescribed. In the meantime I blotted with a cold washcloth after every pee, applied EMUAID and a moisture barrier after every trip to bathroom, wore dry, 100% cotton panties, cut out sugar, alcohol and most gluten ( i eat it now with no ill effects), reduced my stress, added 18 supplements to balance my immune system, finally got a steroid ( clobetosol) and am now in remission. ( SINCE october). Most of my right labia has disintegrated, my left is fine, my clitoris lost much of its sensitivity - steroid earlier may hv helped, I hv no narrowing of vag or anus ( thus far), sex is still fine except orgasims are a 1-2 instead of a 9-10. I think finding a good doctor, following their advice for steroid use, staying moisturized and modifying your diet will all help you get it under control. Don't freak yourself out with what could happen, take it 1 day at a time!

best wishes!

Hi Jan, yes it is an awful disease but we can get it under control by diet , and vitamins. I have been soaking in Borax and that has been helping me and also i use Emuaid and alternate with Aloe with Turmic that you can find here . check out Borax for Healing.. like for me I canot eat Tomatoes or sugar cause that causes a flare up. hope this helps .