Hi, I am 75 and was diagnosed with LS about four months ago after a few months of intense itching.

Please do not advise people to do that! It is so wrong and bad! Cool all the way!

Pardon!

I think Patricia has found a way that suits her and you for yourself too I hope. 

Goodness me I'm at liberty to share the principles which work for me especially if they help someone else and ones GP is in the loop (not that its advisable to hand control over one's health to someone else).

Wrong and bad is a bit inflammatory Kathleen..like the condition!!

Marey, putting hot water or chilli,powder on there would be awful  because it would burn and could leave some people in a terrible state. I would hate to,think anyone would try it. Of course it is okay to suggest ideas but not something like that which is contrary to expert advice. We cannot advise anyway. Do not suggest something so harmful in case someone innocent tried it please!!!

There s a misunderstanding here...which is that I'm not recommending chilli powder for the vulva! There is a mix with aloe vera for psoriasis that can be made up which has granted relief ...on the basis that it helps the skin to bring the inflammatory agents operating to the surface to aid with elimination. Its  a surprising tip that I was passing on with respect to PSORIASIS.

With respect to hot shower water to the vulva I stand by that tip...since we were being asked Kathleen....for what we've each, individually (there's no need for a concensus), found helpful. If I get a flare up, for example because I've 'cheated'  by eating processed or inflammatory foods that is my 'go to' remedy. It works every time. You should try it! Don't forget I don't use steroids I control my condition by other means and am working towards a complete cure.

Very Best Wishes

Marey, I left the other site because people were advising not to use conventional medicine like the creams and ointments and specialists who have expertise and studies in LS. Heat is one thing the specialists say is never to be used. I trust my specialists and not gimmicks or unqualified people messing with people's health. You were one of the people on there who was giving bad advice so I am prepared to warn people not to go down that track. I have had this LS for about 15 years. You were told to go to alternative medicine site as the people who monitor this do not recommend alternative medicine so please start your own alternative medicine and allow people to choose that and leave the mainstream site to people who trust their specialists.

Sorry which specialists say that heat is never to be used? I have two GPs and a Consultant supporting my health regime ...not one of these have ever advised me not to use heat. I have even mentioned the benefit I get for addressing any itch in this way and was encouraged to go with what works for me. This is about simple things that people can do...that others apparently want to hear about irrespective of which medical regime is chosen.

I was not 'told' to go anywhere ....!! An alternative was opened up as an additional facility. It may not be for you but that doesn't convey exclusivity to you or others to any particular regime. I'm not going into my health protocol here but am engaging in chit chat.

You have had LS for 15 years ...that's not a good thing Kathleen....and I rest my case that its appropriate to look elsewhere for A CURE and not merely a suppression of symptoms. BUT a maintenance programme is your choice which you are free to exercise.  I completely agree that the Alternative med site is there and that  you visited and made your views known (just as I am now - with the intention of not repeating myself in the future). That's where I'll be exploring alternative Meds but we are all equally entitled to visit both locations. Hope this clears up any confusion. IE:  Whilst I'm here for chit chat and general exchanges in reply to those enquiring about alternatives....and I'm happy to re-direct others... apart from simple things such as the benefit of hot and cold compresses (alternated can also work), as well as other methods of stimulating the circulation and de-toxing, I'm not insisting that members give up their meds...that would be wrong.  But I don't take steroids myself.  Why does it make you uncomfortable? What is it about different people having different practices that upsets you? I invite you to consider the question as neither bullying nor exclusive behaviour is tolerated here I understand and I am getting quite concerned about the extent to which I'm having to defend myself. In the interests of information and open handedness I am engaging with you by replying and setting out my position. I am not being rude but I am having to be assertive. Not only for myself but for others. This is a space for folks with LS. 

Best wishes

 

I do not go to the alternative site and have no intentions of doing so. 

I live in Australia and attend the Mercy Hospital and the most important thing is not to apply heat.

I manage my LS because I have excellent care.

I use Advantan fatty ointment because it is absorbed well.

i also use Dermeze similar to Vaseline. Why are you posting 

if you no,longer have LS? As you say it is for folks with LS.

i agree with Morrell but not you. 

I care that people who are at the beginning of their treatment might apply hot water and hurt themselves. 

I urge everyone to be guided by their specialists and not take any advice on here that they do not discuss with their specialist and GPs.

 

I was diagnosed with LS last year...and am still working on my cure. 

Regarding the application of heat, hot water or whatever, what exactly does everbody mean.  I wash in comfortably hot water which will not damage my skin.  I have not been told I shouldn't by any medics.  Sometimes a cooler shower sooths things if it is a hot day.  I'm in the UK and we have been having a rare heatwave over the last few weeks, even so I have not showered in cold water.  If I were in Aus, I probably would be having very frequent cold showers.  

The only thing we all seem to be agreed upon is to avoid the usual soaps and scented lotions.  I don't think using water "as hot as I can stand" would be terribly sensible, but I certainly won't be avoiding hot water as long as it is not so hot as to damage my skin.

It is too easy on a forum like this, to be both dogmatic and dictatorial and/or vague.  We none of us even know if what we suffer from is the same condition.  We none of us know what causes it - we can only guess. The Salcura Dermaspray I suggested above was great for me, but might send someone else up the wall with a bad reaction.  Hence the need for everybody to be less dogmatic and to make sure that they are ONLY suggesting what might work.  Personally, I found applying cold water was disasterous - I have no idea why, but it did not work.  Dermovate does work and I am finding it very difficult to wean myself off the highest frequency of its use (morning and night after a shower).

So the guiding principle for anybody dealing with this anew, is to be VERY careful with everyone's advice because they are not you.  Take what people say and apply delicately to try things out and be assured of everone's best wishes; we are all only trying to help.

Best Wishes  Margaret ;-)

That's lovely Margaret and I couldn't agree more especially with the concept of good will that we all share.

I can completely understand that my suggestion about heat is not suited to all or indeed necessarily to anyone else at all. I was responding actually to the broadminded question from Patricia (hello Patricia!) in the same spirit that she was asking. It being a very personal thing.

In my training as a nurse one of the 'olden day' nursing treatments that we used for injury and bruising in particular was alternate hot and cold applications. Its still used to treat animals for example poultices applied to horses. It draws sepsis and can then be either lanced (where there is pus let it out), allowed to drain naturally as I believe happens with LS, or the stimulation promotes re-absorption of the irritant which will have been enclosed and is conveyed for excretion via the lymph system. (Actually that's what cancer does...but its a whole other area!!) 

I have always paid attention to the more traditional treatments which are longer and slower to work but cause no harm, do not drive things deeper (for example suppressing skin conditions results in their manifestation at a deeper level particularly as asthma - as you may already be aware since this has become common knowledge) and are reversible.

I'm going into some detail as I believe you are genuinely trying to follow my small point ...thus I'm responding in the same spirit of trying to overcome misunderstanding. 

I tried the alternating hot and cold ...I started by trying just cold applications but that did nothing for me...but its obviously of great help to others which is brill. 

I'm very hesitant to go into the mechanics again but I don't think anyone is likely to follow any of our suggestions without due caution. I was particular to share that I turn the cold down very slowly...so I have control over the flow and the temp. But for me when the heat gets really challenging is when I feel the benefit. I literally (and I am also visualising the process to assist it in actually happening) feel the toxins being dispersed. I push past my comfort zone and get this sort of very gritty localised feeling ....I kind of grit my teeth to bear it but quite honestly for me the hotter the better. I feel something actually happens and I get a good nights sleep and in the morning when I repeat the process I feel cleansed and fresh for the day.

I read your contribution with interest and that a heat is generated but as you say this has an anaesthetic effect. I am certainly not burning myself however!

Very best wishes and thanks for your enquiry I hope this helps to increase mutual understanding!!

I agree, Kathleen. I cringed when I read that. I haven't taken a hot bath since my diagnosis. I've used cool yogurt on occasion before I was diagnosed and thought I was preventing a yeast infection. I still think it would feel nice on the itch. I used aloe vera juice, cool and soothing on my psoriasis, but never tried it down below. But my standby is oily vaseline-like ointments that block the air.

I don't have the extreme itching, Patricia, but lots of women here talk about rinsing pee off every time, (one girl even had a bidet installed) since it seems to contain irritants, and applying something like vaseline before urinating. I also take great care never to get sweaty down there in bed.

And one way I can be sure to break out in a firey red burning, itching back door area is to eat a bunch of chocolate.

Yes, I have a bidet and it is great but I only ever use cool water but it keeps the area clean. It is only water no irritant!

More heat is the homeopathic anti-dote to heat, inflammation and irritation. One treatment for psoriasis includes chilli powder! You're under no obligation to try it!!