Just been diagnosed with LS can’t cope

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Hi all, I’ve only this week have been diagnosed with LS. 2 white patches appeared and they were freaking me out. Have been researching frantically thought it might be Vitiligo. Nhs appoint was taking weeks to come thou on that choose and book. So went privately, biopsy results clearly shown that a suffer from classic LS. 

I’m only in my 30’s well closer to 40 then anything. 

I can’t bleive they don’t have a cure for this vile disease. 

Basically I don’t know what soaps, shower gels to use, don’t ppl say no sugar sum say it’s ok.

 Any help advice would really help. 

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  • Posted

    Hello Blueplum, I’m 45 got diagnosed at 40. First I had no idea so didn’t make a huge case of it but when i got out of my appointment ( routine) I told myself doctor had a weird look on his face so I investigated and saw i was in for a ride.  I felt exactly like you, but imagine I had no clue about this forum and I tell you you’re going to be fine. The psychological burden of it all is really easier to deal with when you know your not alone and we can all help each other with tips. It’s not easy but at least with this group we feel like we’re not just abnormal women. We are perfectly normal but we have a condition to control and try to treat as best as possible. You will be ok. My gynecologist had suggested a natural soap but you know what I’m trying to use only water. I also rinse after going to toilet. First do what doctor says and get tips from your gals right here. But really no strong or perfumed soap. Keep area moist. I use coconut oil it’s great. Drink water. Try to avoid stress. And sugar. More showers than baths. Try to eat well. Talk to you soon and don’t give up. The girls here are wonderful they really welcomed me like friends and it helps a lot. Your not alone 🤗

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    • Posted

      Thank you so so much for your reply hun. I’m just going out of my mind tbh. Why has it happened to me??? Need to get out of this negivative thinking and deal with this. It’s just I’ve been seeing a heart specialist as well and have a lot of stress worrying about my conditions. 

      Thank you il by some coconut oil and try that. I too wanted to rinse after wee every time. Not sure how to try tbh. It’s so sore using toilet paper but not exactly helping, didn’t want to use a towel due to fabric conditioner etc. 

      Also you mentioned cut out sugar. Last few days I’ve cut out everything not even having a cup of T. No biscuits etc. only the loaf of bread which has the odd sugar added.  Did removing sugar help you ? Thank you so much for your help x 

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    • Posted

      Hi you, sugar is never good for inflammation so... i find it does help. But with this disease that we have we kinda try everything that makes sense you know. Keep your area hydrated...i know it’s greasy my underwear get greased up but i don’t care 🤷???. It’s soothing and coconut oil as a lot of great property.  Did your doctor prescribe a steroid cream? If yes. Put it the way he told you to. But to hydrate i have to say coconut oil is best. I know why you??? I said the same when i was diagnosed.... but now we need to deal with it the best we can and like i said , here you got a bunch of new friends 🤗

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    • Posted

      Hya, me again. I’ve got the steroid cream this is another one that the demotologst has prescribed privately. Will collect tmw & see how it works. 

      Was quite disappointed with my appoint today spent nearly £200 for a 12 min chat anyways fingers crossed things will get better. Odd though she said diet doesn’t make a difference so if up until recently you been eating gluten, dairy, also sugary stuff like cakes chocolate just carry on as no reasearch has proven that food is an issue. 

      Since you was diagnosed few years ago. Can I ask if your symptoms have improved or have they sort of stayed the same ? Also have the patches increased in size ? Do you still use your creams? 

      Thank so much sorry for asking so many questions. Thanks hun.  

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    • Posted

      Good morning you, I do use my steroid cream every 2 days and also when i feel a itch. My spots have grown a little bit but nothing freeky. I find my clitoris is covered a bit more then the growing of patches. I know that no reasurch has proven anything about food but in our condition i really think that eating a tat bit better can’t hurt. And I did read that sugar increases inflammation so that is why i try to be concient about food but i do eat what I want at times because it’s also part of living. Don’t get me wrong I cut sugar where I know i can without stressing to much on it. With time in this condition we just try to do our best to slow the evolution in the possibility that we have in our hands , like with food, oils to moisturize, even though doctors don’t tell you to apply oils it’s a good thing to do so....yeah I try to had those little actions in my life and frankly for me it’s not deteriorating... it feels stable so i keep up those little efforts. Exemple sodas are not a big effort for me to cut out,so i do but once in a while i have some. Coffee I take one a day with just a pinch of sugar. I was never a huge fan of sugar... so it’s not to hard. But I do have my chips on weekends lol. Simple things helps sometimes. That’s in my case. Hugs 🤗 

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    • Posted

      £200 should have bought you a half hour so that is disappointing for you!

      The steroid cream is important and use it sparingly and only where you were told to or use a mirror to check. It is hard at first to get it right.

      It will get easier though!

       

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    • Posted

      AFternoon hun, looks like you have every thing under control then with me my emotions are all over the place. Just can’t get my head around it Spouse with time things will improve. 

      I’m a big chips lover use to have them regularly with meals etc I’ve cut them out & sugar too hoping things improve. Wish I can get a balance of it all. I’ve had 2 circle patches on either size and now it’s all increasing I’m rubbing the cream in as prescribed hoping things improve. Hope things get better for you too. x 

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    • Posted

      Hi hun....it’s not all under control trust me I hardly have any sensation of my clitoris. But I hang in there. After almost 5 years i had time to get better psychologically and had time to accept my conditions. Give yourself time and the best thing is at least you can talk about it. It took me so long to find this group so i suffered alone like 4 years. Trust me it’s gonna be ok you will get more at hese with treatments and learn to know what’s good for you. Take time to rest and be good to yourself. We are all the same with this condition your not alone. We are normal and worthy. We just have a condition.  Anytime hun 🤗

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  • Posted

    Believe me, NO SWEETS. Use 2 tsps. Borax in 1 Litre bottle, shake until dissolved

    use it after going to bathroom as many times a day as you go. Can put in spray bottle. Don't dry the are too much after. Then I use moisturizer 15 min. or so after. I use coconut oil. Organic. Helped me greatly to the point I haven't used it now for at least 8 months. If I feel like it might start up, I go back to Borax. The  kind you buy in laundry section of grocery store. Something like 20 Mule Team on pkg.

    Try it, and good luck. I agree, there should be a cure for it. But being a women's disease, and men do research , well need I say more?

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    • Posted

      Hi hun, yes More awareness needs to be made as I’ve never even heard of this horrid condition. Hope they start soon. 

      Borax - have you had any side effects from it? I will give it a go.l thank you. Also is the organic coconut oil better? Holland and Barrett ok to buy from? 

      Also have you cut of sugar completely ? Thank you so much hun. 

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  • Posted

    By the way, don't use harsh soap, you really don't need soap if you use water a few times a day. Also don't use laundry detergent on your underwear.  It's irritating to the delicate parts. I use hot water in the washing machine. That's it.

    but NO SWEETS.

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    • Posted

      Hi hun, I don’t eat sweets, will try washing the underwear sepearetly then, only water isn’t good as need to kill the bacteria germs if any are on there specially after applying the creams etc.

      have you make any diet changes ? Also had ur condition improved over time ? Thanks hun x   

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  • Posted

    I use soap free wash but avoid that area directly. Keep it dry and use the ointment or cream your specialist prescribes. Make sure you have regular checks as it changes over time. They look to see if you are getting the right spot and tell you how much to use and how often. 

    Wash your clothes in a sensitive wash powder/liquid. Don’t scratch or break the skin. If itchy use your ointment sparingly. The vulva area is more delicate than the anus area so if it goes to the latter it is less scary.

    You need a specialist as GPs do not see it often enough to know what they are looking at. 

    For consolation, in the scheme of things, there are worse things to have. Try not to worry as that is counterproductive as stress makes anything worse.

    Mine has lessened over the years with dedicated care with the ointment.

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    • Posted

      Hi hun. That’s great news yours improved over the years. I’ve got a consultation today privately got a million & 1 questions to ask. Just wish things could be better - I keep getting flare ups coming on the outside - must be something im eating ive cut everything out Tea, milk, sugar and eat. Complete bland meals in the hope that things improve. I’ve heard cutting gluten products out helps. Have you made any diet changes ? Thanks hun x 

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    • Posted

      It is auto immune so may have nothing to do with what you are eating. Sugar is empty calories anyway so fruit and vegetables are much better for you.

      I will never cut out my cup of tea or my milk. I only have a couple a day anyway.

      Yoghurt is very good.

      i have stopped those flare ups thankfully. 

      All the best with your consultant appointment.

       

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    • Posted

      Hya hun, thanks for your advice. My heads all over the place so haven’t been concentrating on diet but i need too. 

      Thanks hunx 

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