Bicarbonate of soda washes

Yes I like the water warm too but some times it's not available when your out some where , so I suppose il use warm when I can , I am trying to find things that help , I havnt been diagnosed with LS yet but the gyne said he suspects it and I'm waiting on a dermathologist app , iv no white patches or fusing just the skin is sore to touch and feels burning and slight sore itch some times , do you mind if I ask what would be the correct procedure for cleaning underwear , at the min I'm boiling in water and nothing else in case any detergent aggravates me , like this a year now and already fed up of it and feeling down at times to think iv to do these things for life and fear of it getting worse , thank you for your reply

Hi Wigster on your question on underwear- I changed to all cotton underwear and whenever possible wear none! I wash now in Eco Friendly product (I use to soak all my underwear in Nappysan!!). I also use to wear   nylon tights under tunic tops etc. - changed to cotton, wool tights or now in skirts or a dress. As soon as I get home from work I get out of work clothes and into baggy PJ'S or long tee-shirt top.  Fresh air circulating is good for problem.  

Hi jess , ok so do you still clean after every loo visit ? And just dry well , God you'd be wore out wondering what to do and what not to do , at the minute I just have soreness and burning on the skin , no whiteness or fusing , God I hope I can contain it but as time is going on it seems to be spreading , only started in a small area and now there is more of the vulva sore , thank god for all you as a support and for advice

Hi Wigster My LS started in the middle of a very hot summer so I always found rinsing with cool water a relief but I was also drinking a lot more water so visiting the loo a lot more.  My Doctor and a couple of other posts here suggested I stop rinsing so much and things did improve.  I still rinse occasionally but not every visit.  I shower daily, sometimes twice, and just wash with warm water in that area only nothing else.  Things did settle a lot when I did this. It is a challenge working out what is best.  Mine started like you with the burning and a UTI infection which I think exsposed my LS but I had obviously had it for many years but no symptons- no white patches or itch but when I did look at myself yes no Labia  Minora - all but disappeared!!  

I was shocked. It took me 4 months to get things comfortable and completely rid of the burning and rawness. You just have to have to hang in there like other ladies say it DOES IMPROVE with steroid treatment and I have found the advice on this forum so helpful I would have gone nuts without it. So many lovely people sharing it's just fantastic as doctors really don't have much experience with LS, not in my region anyway. 

Thank you jess , it is hard to know what works , you try something and think you get relief but next time you try maybe no relief , hard to know what to be using , when u say it took 4 mths to ease the rawness , were you using the steroid twice a day or once a day and for how long ? I was using twice a day but thought it might be making me feel rawer ! So now I'm using once a day as It burns when I apply it but don't know how long I can use the cream once a day or when should you be feeling it easing ? Iv so many questions ? Some days I feel so down that it might never feel comfortable again and I'm gonna feel sore forever ! Did your LS progress from burning and rawness to anything else , I'm praying this doesn't get worse if your looking after it , I keep thinking why or how did I get this horrible thing , iv had 5 children and never had any bother down below , it's like an emotional roller coaster some days , sorry for the rant and thanks for all advice ye are all great

Hi Wigster - I was told to use steroid twice a day but to be honest at first was

not nor did I really know where to put it, or told much. Once I had done all my reading I started to use it correctly.One of my other issues was I was mixing too many other products as well trying to get it to calm down and I believe made things worse. We are all different but for me anything other than that than steroid in that area just caused havoc. I am still not convinced I have LS as biopsy came back non-specific but I have completely lost Labia Minora and very subtle white areas. Tingly on left side which I think is the final bit of labia minor going. Been to see 5 specialist- 2 convinced on presentation this is LS and probably had it many years until it kicked off with my first ever UTI and BV.

Thank you everything is worth a try , it's trial and error , very hard journey to find out what works

Just a thought are you using a steroid ointment, Clobetasol or Dermovate, The same product just one is the generic name.  Some people find the cream contains ingredients that aggravate them and make them sore, while the ointment does not.  Dr. Goldstein recommends the ointment too.  I found the cream caused me to be sore but as soon as I used the ointment things calmed down.  I also use manuka honey on sores and tears, coconut oil and Epaderm (an emollient wash prescribed for skin conditions) for moisturising.  This combination will help me to calm things down quickly.  I use the Epaderm for washing and for moisturising after every pee.  You can use this to wash the genitalia without water between showers/baths.  Do not let things stay damp for too long.  Dry after washing with a patting motion.  Do not rub as this can cause damage.  Wash only once or twice a day at the most and use something like Epaderm with water to wash.  Some people find Oilatum a good product to shower/shampoo with.  No perfume and use a non biological soap powder to wash your underwear.  I use the spray bottle method with a pinch of bicarbonate of soda when out and about if I have to wash and use toilet paper to pat dry.  I found some very small spray bottles in a pound shop (3 for a pound) containing hand sanitizer which I washed out and use.  They are the size of a pen.

Thanks Chrisy , we are all in this together x

We certainly are x