Healing with Perrin naturals anyone

I agree - those suffering are particularly vulnerable to anyone offering crazy 'quick fix' products; it's important to not just read forums but to research the ingredients and preparation for such products, and then see what proper academic research has been done to support crazy claims. It's SO annoying to see this sort of thing going on, expoiting those who are at the most desparate point of illness. Please also can moderators remove what are obvious adverts and plants? 

I was away last week and catching up this week but have deleted several posts and deleted the user plying for trade. 

If at any time any user thinks someone is trying to advertise or promote etc the please use the "Report" link on the post to let us know. This is the best way to draw things to our attention and all reports are looked into.

Regards,

Alan

Yes, yes, yes, YES!  Perfect advice.

The best solutions are the simplest, natural ones - raw (cooking grade) coconut oil is extremely cheap for a huge tub (do NOT use vaseline, it's a petroleum product) and manuka honey (expensive, but just use tiny amounts mixed with coconut oil to help application).  Anyone trying to sell creams and potions that 'reverse skin cancer' or any other such horrible nonsense should be permanently barred from forums like this; it's SO appalling to give desperate people hope, and then try and sell them a product or service that's yet more snake oil... 

Hi Sue!  I have tried those Perin products, and they did nothing for me, but burn my skin, and made it even worse! Plus they are very expensive, and for all you get!  Val.

i want to try your recomendation

For cleansing after toileting use 2 pinches of bicarbonate of soda in 6 to 8 oz. of water...and spray it on.  Or you can use a bit of witch hazel mixed with water for the same effect.  Then use a small dab of 99% or higher aloe vera gel...after one of these to help with the itch and healing. Coconut oil is also good for moisturizing. A very good grade of Manuka honey is good for healing splits (the healing properties of Manuka honey are medically documented). Take a small amount out of the jar (I use a cotton swab) and apply it at night before bed and wear some cotton panties. Takes about 3 days...but works very well. These things are natural...and other than the Manuka honey very economical. However, the honey lasts a long time...so it that aspect is also economical.

Oh, you can find the pure witch hazel online...or possibly in a local health store.

Thank you. Before diagnosis I was using KY jelly for a barrier after urinating. And used a little vagisol at times. I was doing much better but then after diagnosis I started steroids and he wanted me to use a petroleum jelly rather than KY. I was in despair and anxiety and things seemed to go south and felt I was seeing a regression. Oh i was using coconut oil since diagnosis also . I felt like something must not being agreeing with me.i did have my period too. Does that make it worse?

Does Manuka honey heal the scars or the crinkly skin?

sandra..I have had flare ups that last a couple of weeks, so speaking for myself, I don't  find that to be too bad, obviously its not great, but I can deal with it.  Remember, you have only recently  been diagnosed, and so you are bound to feel a bit shaky and a bit panicky, that's normal, but once you understand the Condition more, you will feel so much better.  

So, make sure you read the new members post at the top of the page, as it contains a lot of good information, and of course read some of the older posts.  There are many women on this site that have had this condition for years and are more than happy to help just diagnosed, people like yourself.  Feel free to just ask anything your worried about and you will get a response.  It really is not that bad, once you understand what you are dealing with and know how to manage it.

Thank you so much. I am not coping well. Can hardly eat and sleep is affected. Your kind words meant so much. I am experiencing swelling. Will that go away or is that prt of fusing? Right now it puts me into anxiety mode to do research I've scared myself by looking at ghastly photos. Does that happen even with steroids?

When you say swelling, where exactly? is that on the areas that you have put the cream?  I dont know if you are aware but its important to use a magnified mirror to apply the cream in just the right areas. I have not had problems with swelling, so I'm not too sure about that, everyone usually has an array of different symptoms, so maybe for you its all just part of LS, someone else may have an idea with regard to that.

I honestly believe from my own experience that if you keep your undercarriage well lubricated that fusing will probably not occur, I say probably, because I have some fusing, this occurred before I  was vigilant, and knew to keep that area well lubricated.  I have since been very careful with that and no more fusing has occurred, so in your shoes thats what I would do, every single time you use the bathroom, spray with water, dry, apply something like coconut oil, and I really think you should be okay, its when the labia minora becomes "LS sticky" that problems occur. 

I did not know that. My gyn gave me so few instructions I feel so in the dark. Is it only to hit the white spots? Cause I was covering more than that!

U just gave me so much more hope. So keeping things libricated is crucial from what you are saying. He wanted me to use Vaseline. Swelling is between labia majoria and labia minors and labia majora.

Sorry. Some extra words in there. Labia minora and Labia majora

The cream should be applied to the problem areas, (like the white patches/spots) and only use a tiny bit, around the size of a pearl.  It is tricky just applying it to those areas, but you dont really want to be getting this cream on skin that does not need to be treated. I am not sure about the swelling, but I wouldn't panic, it could simply be an initial reaction to the cream and it may settle down after a day or so, just keep an eye on it, and if it gets worse then you will have to let your Doctor know.

Vaseline is fine to use, its just a bit thick and difficult sometimes to apply, whereas coconut oil or Emu oil slides on faster, easier. 

Great info renee.Thank you xx

Hi Guppy, you've just enlightened me about offering anything other than support and advice. Ie give directions to something or product .Please moderator consider 1,is this person offering charging for their services eg they are a business exploiting these vunerable ladies? I think not.

2)if the moderator themselves had an illness any illness where others offered help by what ever means for no charge would you not consider it?

is it breaking the law.? Introducing terms and conditions works both ways one for the site provider and two for the protection of the site users .Id be the first to ban and prosecute any claiming miracle cures, any company hidden under a false name or product manufacture who is trying to flog their product.But in this case is that what is happening? I don't believe so .If censorship of this site for the customers "protection" prohibits individuals offering help and guidance so long as it's not illegal drugs  if they are stopped from doing so, many will leave your site and not return.moderators by their very name and purpose use logic, sense and reason of the facts before them.In education I moderator end over eight different college programmes led three and trained moderators .this is not education but moderators are there to moderate .I hope common sense prevails here and real sincere help offered with integrity is allowed.I am so grateful for this forum for the women on it fir their openness and sharing, their honesty and searching to help each other , don't censor that which is constructive and aids both the forum readers and the sites management.

Hi I was diagnozed with ls just over a week ago, and my gyney told me to keep my volva area and any other area where i'm affected very moist.  She has given me a large tub of Aqueus cream, and told me to apply it every time I use the toilet. She has also given me Steroid cream to apply night and morning.  She said the main thing is to keep all areas moist.  Hope this helps anyone else.  Val.

Hi Yvon!  Well said! Agree with everything!  This forum is for discussing and helping one another with this problem, and any advice given is gratefully received, and I as a new user certainly am so glad of this forum, and others like it!  Val.

As a new member on this site, I was surprised to read your comment below:

"whatever you do don't listen to any medical people who tell you that there is no treatment to repair the skin and return you to a new type of normal"

Also with regard to the Skype sessions you offer, are these free?....or are you charging for each session? Please can you clarify this. Also with regard to the cream, you mention a sample, so if I wanted more, I'm guessing there would be a cost involved....right? How much would the product cost after the free sample?

The way I'm reading what you have written, it appears that you are trying to market your services. Please can you clarify what it is you are offering....i.e. is it free advice to sufferers and free products, or is it a business proposition where you are actually selling your services, and taking payment from sufferers on this site, for your advice (skype sessions etc) and cream etc. Please advise. 

Thank You,

Hi Yvonne,

 think you are being a little naive here. I am a regulator visitor, and contributor to other sites relating to other conditions, and I can say with a great degree of certainty that this post would be prohibited and removed immediately, as regardless of whether or not you think Arleena is offering her services and products free of charge, the fact remains she is clearly marketing her services and products on a public site, and may not be necessarily offering the best advice for sufferers, and she is doing so as someone who herself is not a sufferer.

Rather than trust the opinion and advice of someone online (and which advice does one believe, as there are so many different opinions!) does it not make more sense to make an appointment with a registered naturapath, so that you can discuss your issues face to face?

 

Vaseline is a good barrier...but there is nothing healing about it. Swelling can be irritation from any one of the products you may be using.  There is some trial and error with this disease until you find a combination that is working for you. I had some fusing and reversed it with the witch hazel and aloe vera gel.  My skin went back pink and moist and the itching went away. Too much of a good thing can also not be good. I did get some irritation from using the aloe vera so much (used it continuously for about 10 weeks) so am now alternating with the coconut oil and using the Manuka honey at night stopped the irritation in it's tracks in only one day. If the natural things work for you...then you don't risk the nasty side effects that the steroids can cause.  So try some different things...and do be careful of people offering you a quick cure who are not sufferers themselves...and are just trying to make a dollar off other peoples misfortunes.

Thanks I appreciate that balance. Are you saying you never used steroids and are able to keep disease in check with

Sorry. Sent that prematurely.

So you are able to keep disease in check with the measures you mentioned? I sometimes wonder if the coconut oil is aggravating it. So maybe if I alternated with witch hazel as a moisturizer???

I used a steroid years ago that was prescribed by my doctor and it did not help me...and as I mostly believe in natural methods I used trial and error to find a solution that works for me.  I've had great success with using the witch hazel as a spray...you can dillute it with about 15 to 20% of sterile water if you are using pure witch hazel.  I've used the one with alcohol and it will sting a bit if you are irritated...so you may not want to use it.  I cleanse with this after toileting...then apply 97% or above aloe vera gel...just a tiny bit.  I've started alternating this with the coconut oil as you can get a sensitivity to the aloe with long-term use.  Many also use a pinch of bicarbonate of soda in water in a spray bottle and another person uses dillute cider vinegar...all I believe would be effective for cleansing...dabbing dry and then using either aloe or coconut oil. I use a product called Cetaphil cleansing cream in the shower for down below as it is non-irritating.  If I'm having soreness or the itch is especially bad Manuka honey at night time with cotton panties has given me good results.  Manuka honey (15% or higher) is fairly expensive, but a small jar lasts a long time. I just take a small amount out with a cotton swab and apply it.  It is recognized in the medical community as a great healing salve.

That's so helpful. I'm planning to buy those natural products and see what it does. Sorry to flood this forum with many questions but it's been tremendously helpful.

Do let us know what you find works best for you.  All of us on here are looking for answers to this miserable affliction.  The whole purpose of this forum is to help each other find that magic mix that works.

I am eager to try some of these suggestions and would love to share if I find something helpful.

Hi Sandra!  That's what this forum is all about. Sharing remedies which may help one another. I would be interested of any that you find that help you. I have only been diagnozed with ls just over a week ago, and am just learning things.  Val.

Hi Val! I've only been diagnosed (not by biopsy; he thinks its LS and he is treating me accordingly) This forum has educated me far more than my gyn has! It helps me immensely to keep it very moist. I usually spread coconut oil on most every time I urinate. My gyn suggested Vaseline but one lady on here suggested that vaseline doesn't have any healing power so I am planning to try some of the other suggestions on here. I

do use it on occasion. I also shower off the area or spray off partway thru the day when necessary.

I am using a steroid cream and have seriously reduced my sugar intake. At this point I have improved. Not too much itching anymore but I have some burning, possibly more than before.

Thinking that every time I eat strawberries I get more itchy again. I'm still finding my way. Many more questions than answers but I assure you there are ladies on here that are so helpful!

May I ask how old you are? I'm 44 and was itching for many years. 😒

i really agree with you yvonne. i feel the loss of another participants opinion

I got diagnosed 1 year ago and at the time it was tolerable with the steroid cream, now is a different story. The burning is unbearable. The only thing I am using is the steroid cream 2 times a day and it burns too. I have used some vaseline, but I honestly just dont know what to do. I work full time and have 4 children... I just need relief.. Can anyone help me ? ? 

1. get almond oil add champher oil to it. Apply whenever you feel an itch.

2. go to a traditional chinese medicine dr or Aruuvedic dr and tell them your issue they have remedies that western medicine just don't have.

3. buy some diatomaceous earth and put it on it in the bath and take orally.

4. buy a candida natural remedy pill and start taking.

5. take ester C, L-Lysine, and a hormone balancer like starflower oil.

6. download a meditation from the internet and listen to it once per day.

In no time you will feel back to your old self. It seems to be a mix of something hormonal coupled with stress and being run down  so you have to dress all 3 aspects- the herbs used by the above drs are very good as they seem to support all 3 areas. 

thank you so much for sharing! i will get some manuka honey and try!

i will look into this! thank you for sharing

hi renee , you and guppie are very helpful im new to this forum and learning things i never knew . i was diagnosed over a year ago. im not aware of any damage from the steroid but i recently have been burning i thought maybe a yeast infection, now im thinking not a yeast infection but the lichen